Key Topics on End-of-Life Care for African Americans

Transcription

Key Topics on
End-of-Life Care for
African Americans
An intellectual discourse derived from
The L ast Miles of the Way Home
2004 National Conference to Improve
End of Life Care for African Americans
I N
C O L L A B O R A T I O N
W I T H :
Duke Institute on Care at the End of Life
Initiative to Improve Palliative Care for African Americans (IIPCA)
Supported by a grant from the Robert Wood Johnson Foundation
May 30, 2006
Dear Reader:
On behalf of the project team, authors and participants, I welcome you to read the
manuscripts that we have published in this electronic book form, titled Key Topics on End of Life
Care for African Americans. These manuscripts represent the most important subject areas
covered in a landmark national conference called The Last Miles of the Way Home©, presented
in Atlanta, Georgia in 2004. The Last Miles© conference was the first of its kind, giving voice to
issues in end of life decision-making and caregiving unique to African-American patients, families
and communities. The topics covered in this book range from the impact of health disparities on
end of life decision-making to spiritual aspects of care at life’s end, to sociological and cultural
perspectives on death and dying and finally, even to health policy considerations.
The authors represented here are leading thinkers in this field. This series of papers will
provide useful information for individuals and organizations interested in increasing their
understanding of African-American perspectives on end-of-life care that influence important
questions such as access to hospice and palliative care, and the quality of care delivered in those
settings. We hope that these papers will lead others to do further scholarly work and spur others
to think about demonstration projects and other practical programs that provide beacons to shine
light on best practices for delivering quality end-of-life care to African-American patients and
families.
The Last Miles© conference and the published papers represented here are products of
ideas conceived under the guidance of the late Dr. Marian Secundy of Howard University. We
dedicate this project to her memory.
Richard Payne, MD.
Esther Colliflower Director
Derived from The Last Miles of the Way Home 2004 National Conference
IN TRIBUTE
Who Always Spoke Truth to Power
Marian Gray Secundy, PhD
Dr. Secundy was the director of the Tuskegee
University National Center for Bioethics in Research
and Health Care from 1999 to 2002. The first of its
kind in the nation, the Center explored the core issues
that underlie research about, and the medical
treatment of, African Americans and other underserved
people.
Between 1971 and 1999, she was the professor and
director of the program in clinical ethics, Howard
University College of Medicine, Department of
Community Health and Family Practice. Her research
interests included the ethical dimensions of patient care and minority aging. Dr. Secundy had
been a consultant to the U.S. Department of Health and Human Services and had served on
several National Institutes of Health advisory panels. She was a former member of the Mayor’s
Task Force on Hospice Licensure in the District of Columbia and the National Capital Health
Ministries. Dr. Secundy was a visiting scholar at the Pritzker School of Medicine (University of
Chicago), the Health Policy Institute (University of San Francisco), and the University of Cape
Town, Republic of South Africa, among others.
Throughout her career Dr. Secundy worked tirelessly to correct the racial injustices and
insensitivities that have blighted the United States health care system for centuries and continue
to this day. As a bioethicist with a background in social work, she understood the ethical legal
and social consequences of race in the health care of African Americans, and she addressed
these issues openly and boldly. A major focus of her work was on training and engaging health
care professionals in areas of ethics, human values in patient care and death and dying.
It was Dr. Secundy who garnered funding from The Robert Wood Johnson Foundation for The
Last Miles of the Way Home conference. Unfortunately, she passed away before she could
see her efforts bear fruit. This body of work is the realization of Dr. Secundy’s vision, dedication
and commitment.
May 30, 2006
Dear Readers,
“Education is the only solid bridge you can rely on to transport you over your
troubled waters. So on that premise, I’ll say to you: Use that bridge to get on the
other side where you can stand up and be counted, thereby leaving footsteps in
the sand of time for others to follow.”
Strong and Beautiful Voices
Quotations from Africans Throughout The Diaspora
Author, Christine B. Forte
My mentor and friend, the late Dr. Marian Gray Secundy, was a true visionary and as
such, she led the charge to empower patients and their families to choose their individual
paths for the final journey with respect, dignity and comfort. Moreover, Dr. Secundy
firmly believed that in order to eradicate health care disparities and improve the overall
quality of end-of-life care received by African Americans, education is indeed the solid
bridge by which we can begin to close the gap. I feel honored and privileged to have
worked under her tutelage.
The manuscripts, Key Topics on End-of-Life Care for African Americans, are the
culmination of Dr. Secundy’s endeavors. The body of work presented here is from an
esteemed group of leaders in their respective fields. The papers are intended to provide
a platform for furthering the mission to provide culturally competent care to African
Americans nearing the end of life. I would like to thank each of the authors and
commentators, as well as the entire Last Miles project team, for their contributions and
untiring efforts on this project. Without their dedication and commitment, the Last
Miles conference and these commissioned papers would never have come to fruition.
As stated in Christine Forte’s quote above, it is clear that education can empower a
people and their community. I encourage the reader to embrace this mindset as you
explore the various topics covered here and challenge all of us to forge new paths toward
delivering equitable, quality care to African Americans, each leaving our own set of
footsteps to be followed by those behind us.
Sincerely,
Sharon R. Latson
Sharon R. Latson
Co-Principal Investigator
Principal Investigators
Richard Payne, MD
Gwendolyn London, D. Min
Sharon R. Latson
Authors
Skaykh Ibrahim Abdul-Malik, EdD
Fay Burrs, RN, BSN
Kelvin Calloway, D.Min
Myra Christopher
LaVera Crawley, MD
Joseph Dancy, Jr., PhD, MDiv, THM
Willie Davis, PhD
Diane Deese
Michelle Grant Ervin, MD
Harold Freeman, MD
Bernice Harper, MSW, MSH, PhD
Karla Holloway, PhD
Camilla Hudson
Bethsheba Johnson, APN, BC
William Johnson, MD
Sharon R. Latson
Gwendolyn London, D.Min
Richard Payne, MD
Deacon Rosalyn Priester
Gloria Ramsey, RN, JD
Pernessa Seele
Paul Smith, D.Min
Robert Washington, PhD, MDiv
Jeremiah Wright, Jr., D.Min
Commentators
Congresswoman Donna Christian Christensen, MD
Andrea King Collier
LaVone Hazell
Beny Primm, MD
September Williams, MD
Kristy Woods, MD
Case Study/Town Hall Meeting
Moderator: George Strait
Administrative Staff
Diane Cohn
Dana Hall
Lisa Jordan
Marilyn McKinney
Olivia M. Porter
Editor
Kevin Sanders
Web Site Developer
Jon Goldstein
Michelle Rudolph
1
1.
Historical Perspectives on Racial Attitudes and the Impact of
Health Care Disparities on End-of-Life Care in the African
American Community
•
•
Harold Freeman, MD, Ralph Lauren Cancer and Prevention Center,
New York, NY
Richard Payne, MD, Duke Institute on Care at the End of Life,
Durham, NC
Commentary by:
2.
African American Perspectives on Pain & Palliative Care
•
•
LaVera Crawley, MD, Stanford University, Oakland, CA
Richard Payne, MD, Duke Institute on Care at the End of Life,
Durham, NC
Commentary by:
3.
September Williams, MD, Laguna Honda Hospital
San Francisco, CA
Palliative & Hospice Care in HIV/AIDS–A Community Care
Perspective
•
•
•
Bethsheba Johnson, MSN,CNC,GNP-BC, Luck HIV Health Care
Center, Chicago, IL
William Johnson, MD, Medical Director VITAS Healthcare
Corporation, Chicago, IL
Pernessa Seele, Balm of Gilead, New York, NY
Commentary by:
4.
Kristy Woods, MD, Maya Angelou Center for Minority
Health, Wake Forest University, Winston Salem, NC
Beny Primm, MD, Addiction Research and Treatment
Center, New York, NY
Spiritual Care Near Life’s End including Grief and Loss in the
African American Community
•
•
Gwendolyn London, D.Min, London & Associates, Silver Spring, MD
Robert Washington, PhD, MDiv, Montgomery Hospice, Rockville, MD
2
5.
End-of-Life Care Ministry in the African American Church
•
•
6.
African American Perspectives on Advance Care Planning
•
•
•
7.
Kelvin Calloway, D. Min, AME Church, Los Angeles, CA
Gwendolyn London, D. Min, London & Associates, Silver Spring, MD
Camilla Hudson, Patient Advocate, Chicago, IL
Sharon R. Latson, VITAS Healthcare Corporation, Chicago, IL
Gloria Ramsey, RN, JD, USC Center for Health Disparities,
Silver Spring, MD
Historical & Sociological Perspectives on Death and Dying in the
•
Karla Holloway, PhD, Duke University, Durham, NC
Commentary by:
8.
The Future of Hospice Care for African Americans:
Clinical, Policy & Caregiver Perspectives
•
•
•
Fay Burrs, RN, BSN National Hospice and Palliative Care
Organization HPCO, Alexandria, VA
Michelle-Grant Ervin, MD, VITAS Healthcare Corporation,
Washington, DC
Bernice Harper, MSW, MSH, PhD, Center for Medicare & Medicaid
Services, Washington, DC
Commentary by:
9.
LaVone Hazell, Palliative Care Training and Education
Program (PTEP), New York, NY
Congresswoman Donna Christian Christiansen, MD
United States, Virgin Islands
Theological Perspectives on Death and Dying for African
Americans: Christian and Islamic Perspectives
•
•
•
Ibrahim Abdul-Malik, EdD, Imams Council of New York, NY
Paul Smith, D. Min, First Presbyterian Church, Brooklyn, NY
Jeremiah Wright, Jr., D. Min, Trinity United Church of Christ,
Chicago, IL
3
10.
Family and Psycho-Social Dimensions of Death & Dying in African
Americans
•
•
Joseph Dancy, Jr., PhD, MDiv, ThM, Norfolk State University,
Norfolk, VA
Willie D. Davis, PhD, National Association of Black Social Workers,
Lansing, MI
Commentary by:
11.
Working Together: Organizing the Community to Effect Change in
End-of-Life Care for African Americans
•
•
•
12.
Andrea King Collier, Author, Lansing MI
Myra Christopher, Center for Practical Bioethics,
Kansas City, MO
Diane Deese, VITAS Healthcare Corporation, Chicago, IL
Rosalyn Priester, Amani Care Program of the Trinity United
Community Health Corporation, an affiliate of the
Trinity United Church of Christ, Chicago, IL
Case Study/The Last Miles of the Way Home Town Hall Meeting
Moderator: George A. Strait Jr., Assistant Vice Chancellor Public
Affairs, University of California, Berkley, CA
13.
Biographies
14.
Resource Page
Racial Attitudes and Health Care Disparities in African
American Communities
Historical Perspectives and Implications for End-of-Life DecisionMaking
Richard Payne, MD
Institute on Care at the End of Life
Duke University Divinity School
And
Harold Freeman, MD
Ralph Lauren Cancer and Prevention Center
New York City
[abstract here: About 100 to 150 words]
Racial classifications of human populations are politically and socially determined. There is no
biological or genetic basis for these racial classifications. Health behaviors may be influenced by culture
and poverty. Disparities in health outcomes, sometimes resulting in higher mortality rates for AfricanAmericans appear to influence end of life decision-making attitudes and behaviors. To improve the quality
of end of life care in African-American communities, health care professionals must better understand and
work to eliminate disparities in health care, increase their own skills, knowledge and confidence in
palliative and hospice care, and improve awareness of the benefits and values of hospice and palliative care
in their patients and families.
1
Racial Attitudes and Health Care Disparities in African American
Communities
RACIAL ATTITUDES IN AMERICA AND THE EFFECTS ON HEALTH
DISPARITIES—A PERSPECTIVE
The concept of racial differences and all that this has come to imply is perhaps the
single most important social issue in the history of the United States. Since the
“discovery” of America in 1492 by Columbus, the importation of the first African slaves
in 1619, and the infamous Dred Scott and Plessy decisions in the 1800s that legalized
separate status of African Americans, racially-based social, legal and health inequalities
have persisted to the present. In fact, during the Civil Rights Movement in the midtwentieth century, Dr. Martin Luther King famously said, “of all the forms of inequality,
injustice in health care is the most shocking and inhumane.”1
Dr. King was referencing a growing body of observations documenting racially
and ethnically based disparities in health outcomes. Although these health disparities are
associated with race, it is important to note that racial classifications are politically and
socially, but not biologically, determined. In fact, contemporary genomic studies have
determined that the genetic variations within a so-called racial group may reach 95%,
compared to a 5% variation between so-called racial groups.2 Therefore, to explain the
unequal burden of disease between whites and other groups, one must consider factors
beyond biological differences such as socioeconomic level, cultural and behavior
determinants of health status.
Race is, in reality, a socially and politically determined designation. It is also
often a surrogate designation for more direct and authentic causes of health disparities.
Conceptually, one can consider the effects of poverty and low economic status,
Racial Attitudes and Health Care Disparities
2
interacting with social injustice and cultural factors (i.e. diet, tobacco use, etc.) to
determine how these factors collectively influence important health determinants such as
the use of preventive services, early detection of disease, ready access to medical care for
accurate diagnosis and treatment, etc.25 Differences in these health determinants could
readily explain important disparities between black and whites in terms of incidence of
disease and ultimately mortality. Poverty, acting through the prism of substandard
housing, inadequate information and knowledge of disease and preventive practices, riskpromoting lifestyles, attitudes, behaviors, and diminished access to health care can
directly influence health status.26 Although there is a wide spectrum of wealth in
minority communities, according to the U.S. Census Bureau, 35 million Americans (12%
of the US population) are classified as poor, but African Americans and Hispanics
comprise 24% and Hispanics 22% of this group. This compares to 8% of whites who are
classified as poor.3
Disparities in health between blacks and whites are manifested in all major
disease categories and occur in all clinical settings—hospitals, outpatient clinics,
emergency departments, operating rooms, and nursing homes.4–6 Examples of health
disparities are shown in Table 1.
3
TABLE 1
RACIALLY BASED DISPARITIES IN HEALTH OUTCOMES
SOME EXAMPLES
Condition
Cancer (all sites)
Cancer (lung)
Renal Transplantation
Pain Management
Example
Incidence, 1996-2000
561.2/100,000 white men
696.8/100,000 black men
Reference
NCI Seer Data, 200319
Death Rates, 1996-2000
249.5/100,000 white men
356.2/100,000 black men
NCI Seer Data, 200319
Rates of Surgery for Stage I &
II disease
76.7 % whites
64 % blacks
5 Year Survival
34.1 % whites
26.4 % black
% Evaluated for transplant
70.5% white women
50.0 % black women
76.2 % white men
53.9% black men
Likelihood of access to
opioids
74% white neighborhood
24% non-white neighborhood
Analgesics for bone fracture
Blacks 66% less likely to
receive analgesics than whites
Hispanics twice as likely than
whites to receive no
analgesics
Bach, NEJM, 19996
Ayanian, NEJM, 199916
Morrison, NEJM,
200022
Todd, Ann Emerg Med,
200023
Todd, JAMA, 199324
4
The impact of these disparities is profound. A recent report observed that if
differences in age-adjusted mortality between African Americans and whites were
eliminated between 1990 and 2000, then approximately 890,000 African American lives
would have been saved.7
A recent Institute of Medicine (IOM) study found that “although myriad sources
contribute to these disparities, some evidence suggests that bias, prejudice, and
stereotyping on the part of health care providers may contribute to differences in care.”8
These sources of disparity are manifest in all parts of the health care system and involve
administrators as well as providers. Bias and stereotyping is likely, in most instances, to
be subconscious. For example, one study found that mental health professionals who
were “primed with stereotype-laden words” were more likely to evaluate hypothetical
patients more negatively than when primed with neutral words.9 Another study noted
that doctors rated black patients more negatively than white patients in a number of
categories—intelligence, likelihood to abuse drugs and alcohol, likelihood of adherence
to treatment recommendations—even after the patients’ income, education and
personality factors were described.10 These studies and others support a conclusion of the
IOM study, which is “there is considerable empirical evidence that even well-intentioned
whites who are not overtly biased and who do not believe that they are prejudice typically
demonstrate unconscious implicitly negative racial attitudes and stereotypes.”10(p4) In
fact, conditions of clinical uncertainty accentuated by time pressures are features which
promote stereotyping,8 making African American patients and their doctors facing the
complexity of end-of-life decisions even more vulnerable than in other clinical settings.
5
The IOM study recommended several approaches to minimizing health
disparities. Awareness of the extent and impact of health disparities is essential.
Dissemination of cross-cultural educational programs that focus on understanding
attitudes, increasing knowledge of different cultures, and acquiring skills to improve
communication and caring across cultures is another essential step. More data about
specific patient characteristics and outcomes, generated by standardized data collection
methods is also critical to overcoming disparities. Many other strategies such as
increasing availability of quality translational services; health system changes to decrease
care fragmentation and the more widespread utilization of evidence-based clinical
practice guidelines must also be incorporated with these core educational and clinical
recommendations to have a truly durable impact on improving racially based disparities.8
DEATH AND DYING IN CONTEMPORARY AMERICAN SOCIETY
Definitions of hospice and palliative care, and current rates of hospice utilization.
Palliative care is a relatively new term, particularly in the United States. There
are many published definitions, but essentially all encompass the terms included in the
2002 World Health Organization description of palliative care which is “an approach
which improves quality of life of patients and their families facing life-threatening illness
…through the prevention and relief of suffering…by means of early identification and
impeccable assessment and treatment of pain and other problems, physical, psychosocial
and spiritual.”11 This definition is attractive because it emphasizes the comprehensive
approach to assessment and care, focuses on the need to attend to suffering, and is does
not restrict the need for this type of care exclusively to dying patients. Hospice care can
6
be considered as subtype of palliative care applied to dying patients and their grieving
families. Palliative and hospice care comprise an array of services at the core of which
involve around the clock availability of a interdisciplinary team typically consisting of a
physician, nurse, nurse aide, chaplain and social worker. The services provided by highquality palliative care and hospice teams include ongoing communication and care
coordination, expertise in symptom assessment and treatment, anticipatory guidance,
crises prevention and early management, the provision of spiritual care and advance care
planning, and bereavement support for the family. Hospice is a proven model of
palliative care delivery for dying patients. Much of palliative care delivered in hospitals
and outpatient clinics and offices are delivered by teams of doctors and nurses which are
not a part of community-based hospice programs, although there are exceptions. By
contrast, more than 90% of hospice care delivered to dying patients is done in the home
or nursing home setting. In hospitals and physician offices, most palliative care is
delivered by clinicians who are usually not part of community-based hospice teams.
In 2006, there were approximately 2.4 million deaths in the United States, and
about 2 million of these can be anticipated. In theory, these 2 million deaths would be
appropriate for hospice care. In 2004, there were approximately 3,600 hospices in the
United States, and about 1.6 million individuals, representing nearly 60% of eligible
patients and families.12 This number has grown by about 44% since 2002 and is likely to
increase given the aging of the United States population. Cancer was by far the most
common diagnosis associated with hospice entry, accounting for 45% of patients,
followed by heart failure, dementia, lung, and kidney disease. It is worthwhile noting,
however, that non-cancer diagnosis accounts for much of the increase in hospice
7
utilization over the past five years. This very respectable growth in hospice services is
tempered by the relatively short lengths of stay in hospice care. Under the Medicare
Hospice Benefit, patients may enter the hospice up to six months prior to death if two
physicians confirm that the individual has a terminal prognosis, and the patient is willing
to elect the benefit. Despite this, the median length of stay in hospice programs across
the United States in 2004 was only 22 days.
Fewer than 10% of patients utilizing hospice in 2004 were African American,
even though they make up more than 13% of the U.S. population, suffering a
disproportionately higher mortality than whites.12 The reasons behind this disparity are
complex and incompletely understood but will be described in more detail in an
accompanying chapter in African American Perspectives in Pain and Palliative Care.
The gaps in hospice utilization between blacks and whites persist across age groups.13
End-of-life “movement” in USA in latter 20th Century
In the past 25 years, in part spurred by the highly publicized “right to die” cases
Karen Ann Quinlan in 1985 and the publication of the SUPPORT (Study to Understand
Prognoses and Preferences for Outcomes and Risks of Treatment) studies in 1995, there
has been a remarkable increase in attention to the needs of seriously ill and dying
patients.14 This attention has become manifest in several ways. Hospital-based palliative
care teams have increased by 90% from 1998–2003, according to the American Hospital
Association (AHA) annual survey of hospitals.15 Hospice programs are growing and
seeking to expand access to previously underserved ethnic minority populations and to
dying children. The education of physicians, nurses, and social workers to improve their
8
skills and confidence in the practice of palliative medicine has received increased
attention, and there are formal curricula available for clinicians which have been
endorsed by the major professional organizations representing these disciplines.
Physicians can now earn certification in palliative medicine from the College of Hospice
and Palliative Medicine,16 and formal designation of the specialty of Palliative Medicine
by the American Board of Medical Specialties is anticipated within the next five years.
We have an emerging consensus on the essential aspects of quality end-of-life
care, based on evidence obtained from well-designed studies surveying patient and
families and health-service research critically evaluating relevant parts of the health care
system. A high quality health system should practice patient-centered care at its core,
emphasizing attaining the correct medical diagnosis and customizing evidence-based
therapies, particularly pain and symptom management, and should provide nonfragmented treatment, which anticipates and prevents crises whenever possible. Care
should acknowledge and respect the role of the patient in family and community. The
overriding goal is to help the patient live as fully as possible, with the highest possible
quality of remaining life. Thus the key domains for quality care at the end of life as
emphasized by several researchers and the National Hospice and Palliative Care
Association (NHPCO) include pain and symptom management, shared decision making,
a focus on patient satisfaction, and coordinated, non-fragmented care, ultimately leading
to safe and comfortable dying, self-determined life closure and effective grieving for the
family left behind.17
9
Realities of death and dying for African Americans
Given the background detailed in the prior section, we can now place the
contemporary circumstances of African American patients and families in perspective.
An undeniable reality of the legacy of societal and medical racism and its lingering
effects into the 21st Century is the persistent gap in death rates and life expectancy
between blacks and whites in the United States. Although deaths rates from all causes
fell consistently for blacks and whites in the second half of the twenty century, blacks
continued to die at 1.5 times the rate as whites (see Table 2).
TABLE 2
MORTALITY RATES-ALL CAUSES, 1950–1998
YEAR
1950
1960
1970
1980
1990
1998
WHITE
8.0
7.3
6.8
5.6
4.9
4.4
BLACK
12.4
10.8
10.4
8.4
7.9
6.9
B/W RATION
1.5
1.5
1.5
1.5
1.5
1.5
In 2003, the age-adjusted death rate for the black population was still 30% higher
(1.3 times greater) than the white population.18 There are many reasons for this persistent
gap, including differences in rates of health insurance, which are critical to access to
health care services; a greater likelihood of advanced stages of cancer and HIV-AIDS in
blacks vs. whites at time of presentation for medical care; higher rates of tobacco and
alcohol use in blacks vs. whites; and generally lower rates of utilization of healthpromoting lifestyles and use of preventive measures. As indicated earlier, these
10
socioeconomic circumstances and health behaviors have at their root complex
interactions between race, culture and poverty.
For example, cancer death rates for the years 1996–2000 were 356 per 100,000
African American men, compared to 249 per 100,000 white men.19 It is also true that
poor Americans, irrespective of race, have a 10% to 15% lower 5-year cancer survival
than wealthier Americans.20 Many African Americans share a similar cultural
background, if culture is defined by characteristics such as a shared communication
system, similar physical and social environments, common beliefs, values, traditions, and
world view leading to similar lifestyles, attitudes, and—most importantly—behaviors.25
Acting additively or synergistically, the factors of poverty and culture influence the social
environment in which one lives as well as access to information and knowledge and may
be associated with the engagement of risk-promoting behaviors (e.g., tobacco use,
consumption of high-fat diets). When one then adds greater probability of diminished
access to health care, it is not difficult to understand how these circumstances could lead
to higher cancer incidents and decreased survival.
Superimposed on the above are the effects of unequal treatment documented in
the IOM report.8 Thus the manifestation of these profound health inequalities occurs, in
part, because health care providers see their patients (consciously and subconsciously)
through the powerful lens of race. This often leads to false assumptions that result in
serious harm. The unequal burden of disease in our society is a challenge to our
scientific and medical abilities, vision, and presents a profound moral and ethical
dilemma for our society.
11
CONCLUDING THOUGHTS—DISPARITIES & IMPLICATIONS FOR EOL
DECISION-MAKING
The greater mortality rates from almost all diseases for blacks compared to whites
must be considered in clinical and health policy considerations concerning end-of-life
care and decision-making. Almost all frameworks that evaluate the quality of end-of-life
care include the components of symptom management, spiritual and personal growth,
death in a familiar setting, surrounded by family and loved ones; understanding
information to guide decision-making and planning; confidence that one will not be a
financial, emotional or physical burden, and the right of self-determination and control of
treatment decisions and choices.21 The effects of racism and poverty and the associated
marginalization compromise the attainment of quality caring in these domains of end-oflife care. The challenge for clinicians and policy makers is to overcome this ultimate of
inequalities in health care.
12
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Luther ML Jr. Quoted by: Kucinich D. A Prayer For America. New York, NY:
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2.
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3.
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4.
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Ayanian JZ, Cleary PD, Weissman JS, Epstein AM. The effect of patient’s
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6.
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7.
Wolf SH, et al. The health impact of resolving racial disparities: an analysis of US
mortality data. Am J Public Health. 2004;94:2078.
13
8.
Smedley B, Stith A, Nelson A, eds. Unequal Treatment: Confronting Racial and
Ethnic Disparities in Health Care. Washington, DC: The National Academies
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9.
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van Ryn M, Burke J. The effect of patient race and socio-economic status on
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11.
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9, 2006.
12.
The National Hospice and Palliative Care Organization.
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Greiner KA et al. Hospice use by minorities in the last year of life. JAGS.
2003;51:970–978.
14.
Life Tree. Two Decades to an American Culture of Death. Available at:
http://home.earthlink.net/~joyinlife/. Accessed May 10, 2006.
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Center to Advance Palliative Care. Available at: http://www.capc.org. Accessed
May 10, 2006.
14
16.
van Gunten C. Development of a medical subspecialty in palliative medicine:
progress report. J Palliat Med. 2004;7(2):209–219.
17.
Connor SR, Tecca M, LundPerson J, Teno J. Measuring hospice care: the
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Lunney JR, Foley KM, Smith TJ, Gelband H, eds. Describing Death in America:
What We Need to Know. National Academy of Sciences; 2003.
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Morrison RS, Wallenstein S, Natale, DK, Senzel, RS, Huang, Lo-Li. “We Don’t
Carry That”—Failure of Pharmacies in Predominantly Nonwhite Neighborhoods
to Stock Opioid Analgesics. N Engl J Med. 2000; 342(14):1023-1026.
23.
Todd KH, Deaton C, D’Adamo AP, Goe L. Ethnicity and analgesia practice. Ann
Emerg Med. 2000;35(1):11–16.
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Epidemiol. Biomarkers Prev 2003;12 (Suppl): 232-236
26. Freeman, HP. Race Poverty and Cancer. J Natl Cancer Inst. 1991;83(8).
An intellectual discourse derived from The Last Miles of the Way Home 2004 National
Conference to Improve End-of-Life Care for African Americans
COMMENTARY: by Kristy F. Woods, MD- Maya Angelou Center for Minority
Health, Wake Forest University, Winston Salem, NC
Historical Perspectives on Racial Attitudes and the Impact of Health Care
Disparities on End-of-Life Care in the African American Community
How do racial attitudes and disparities in healthcare impact end of life decisions? The
past century has witnessed incredible advances in the prevention, diagnosis and treatment
of acute and chronic diseases. With current and anticipated developments at the cellular
and molecular level, future opportunities for continuing these advancements to improve
life expectancy and quality of life for Americans are enormous. For those with incurable
disease our ability to provide comprehensive care and palliation has similarly improved.
Despite these achievements, it is clear that all of our citizens have not benefited equally.
Differences in the incidence, prevalence, mortality rate of disease and other adverse
health conditions persist among racial and ethnic minorities, the underinsured, and the
poor in our country and remain a national tragedy.
On almost every health indicator collected by various U.S. government agencies, African
Americans fare significantly worse than do white Americans. The 2005 National
Healthcare Disparities Report notes that racial disparities in healthcare quality extend
throughout the American healthcare system and are observed in almost every aspect of
care, including end-of-life care. Payne and Freeman’s chapter draws specific attention to
the historical perspective of these differences, highlighting that disparities in health status
and healthcare quality have plagued blacks in this country for more than 350 years.
Any professional who manages the care of African American patients understands that
the sources of racial and ethnic disparities are complex. In addition to the role of
behavioral, environmental, and genetic factors, there is overwhelming evidence that
access to care and healthcare quality significantly impact health outcomes.
This chapter highlights the overarching contribution of social and political influences on
health determinants and inequities in healthcare. Sociopolitical factors have always
impacted - and will continue to impact - poverty and socioeconomic status, public policy,
health policy, and prejudice and/or bias based on race. For instance, the authors note that
racial bias and stereotyping by healthcare professionals, while perhaps subconscious, may
contribute to the lower quality of healthcare observed among African Americans, in
general. For the chronically ill, vulnerable minority population dealing with end-of-life
issues, differential decision-making based on race complicates the already challenging
delivery of supportive services and palliative care.
The article concisely reviews the end-of-life movement and the growth of hospital and
community-based hospice programs in America during recent decades. The goal of
palliative care is to provide a death free of avoidable distress and suffering - that is, 'a
good death,’ as defined by the Institute of Medicine Committee on End of Life Care.
Payne and Freeman note that while African Americans comprise 13% of the US
population and experience disproportionate death rates from HIV/AIDS, cancer, heart
disease and other chronic conditions, fewer than 10% are utilizing hospice care. I believe
that this disturbing fact touches on one of the most fundamental concerns regarding endof-life care for African Americans - the urgent need to address the multifactorial causes
of disparate healthcare quality and utilization.
For example, one may assume it is a part of the human condition to desire a 'good death’.
Why then, are African Americans not utilizing available services at the same rate as
whites? How does lifetime experience with the healthcare system influences end-of life
decisions? Addressing these questions requires a comprehensive approach. Lack of
access to quality and continuous care may result in lack of knowledge about these
services. Lack of a primary care provider may also result in a black patients being
referred less frequently to long and short-term care facilities. In addition, patientcenteredness of care takes on a more significant role as a quality indicator at the end of
life. African Americans more often report poor patient-provider communication and
mistrust of the healthcare system. Unique cultural and spiritual views may also contribute
to decision-making during this time.
In order to fully reduce or eliminate healthcare disparities at the end-of-life, we must first
address the compound causes of racial disparities that occur throughout the lifespan and
that are highlighted historically in this chapter. We must also move forward with a
patient-centered approach that focuses new efforts on the unique needs of African
American patients, their families and their caregivers.
In Collaboration With:
ABSTRACT: African American Perspectives on Pain and Palliative Care
LaVera Crawley, MD
Stanford University School of Medicine
Oakland , CA
And
Richard Payne, MD
Duke Divinity School
Durham, NC
African American opinions about end-of-life care and decision making are shaped by
contrasting views. On the one hand, African American religious and literary traditions
celebrate a traditional Christian view of death as a welcomed friend. On the other hand,
many African Americans struggle with the acceptance of high death rates resulting from
the impact of disparities in health outcomes and insistent on life-prolonging treatments
often are against the advice and wishes of their doctors. The impact of racially and socioeconomically-based health inequalities, lead to considerations of the trustworthiness of
the health care system, which can influence end of life decision making for African
Americans. Community-based initiatives in palliative and hospice care are described
which acknowledge these important perspectives, and offer models for improving access
to care and the quality of end of life care.
African American Perspectives on Pain and Palliative Care
Everybody wants to go to heaven, but nobody wants to die. It’s not so much the act
of dying itself, but the things that are surrounding death: injustice, poverty,
mistreatment and evil...” There’s a sense that we won’t be stopped by those things—
our ‘somehow theology.’ Some how, some way, we will get through this.”
—Rev. Frank Jackson
Faith Presbyterian Church
Introduction
A cartoon from New Yorker magazine shows the figure of the Grim Reaper with his
infamous sickle in hand, standing at the door of an African American man saying,
“You’ll be happy to know that race played no part in this decision!” If only this were
true! Although death rates for all Americans have been falling over the past century, there
is still a persistent gap; blacks still die at faster rates than whites. In 2003, the death rate
for African Americans was 30% higher than whites {{Hayert DL, 2006 #20431} Hayert
DL et al., 2006}. 1 Higher mortality rates for African Americans compared to whites are
caused by many factors, chief among which are racially and socioeconomically based
disparities in access to health care and disparate outcomes of health care {IOM report,
2003}. 2 A recent analysis of mortality data in the United States concluded that if deaths
rates between blacks and whites were equalized during the ten years from 1990-2000,
nearly 900,000 African American lives would have been saved .{Woolf SH et al, 2004}.
3
It should not be surprising to note that the impact of these dismaying facts is to shape
attitudes about death and dying in African American communities and to influence
decision-making of dying individuals and their families.
The quotation by Rev. Jackson above, eloquently states the circumstances and dilemmas
faced by African American individuals and communities when confronting the realties of
death and dying. It captures the sense of struggle and triumph that has so characterized
the African American experience in the United States and how this ethos is reflected in
views about death and dying. This paper reviews in more detail information about
attitudes toward death, dying and end-of-life care in African American communities. The
discussion is informed by our clinical experiences as well as a review of the recent
literature. We also describe recent attempts to overcome barriers and improve care by
highlighting innovative community-based programs involving faith communities and
medical centers, and hospice and palliative care programs.
African American Attitudes About Death and Dying
Weep not, weep not,
She is not dead;
She’s resting in the bosom of Jesus.
Heart-broken husband—weep no more;
Grief-stricken son—weep no more;
Left-lonesome daughter—weep no more
She’s only just gone home.
—James Weldon Johnson
Go Down Death {James Weldon Johnson, 1927} 4
***
“So now they are trying to get us comfortable with dying?”
—Dick Gregory
Studies of knowledge and attitudes about end-of-life care among African Americans
The two quotations describe the contrast and spectrum of thought in African American
communities when discussing and experiencing death. Our Christian religious heritage,
captured by the James Weldon Johnson spiritual, emphasizes an aspect of death as
“welcomed friend,” carrying one away from the burdens and unfairness of this earthly
life, to meet the resurrected Christ in heaven. On the other hand, as Dick Gregory extorts,
why should African Americans embrace a philosophy of life or health care—affirmed by
most hospice programs—which stresses the need to be more accepting and comfortable
with dying, thereby seeming to concede to the unfairness of racism, social and health
inequalities, and premature deaths in our communities? The tension between death as a
welcomed friend bringing the decedent to their spiritual home, and death as a struggle to
be overcome, just as other examples of injustice and inequality must be overcome, is an
ever-present dynamic influencing African American attitudes and decisions about death
and dying {Crawley L and Payne R et al, JAMA, 2000}. 5
Other narratives exemplify this tension {Payne, Washington Post Editorial, 2000}.6 An
elderly African American man with advanced prostate cancer was asked about his wishes
for future care. During the course of the interview, he was asked about cardiac
resuscitation status and if he was interested in a referral to hospice. He replied, “Do you
ask all your patients these things?” In other words, he was concerned that his doctor
wanted to make the hospice referral and forgo cardiac resuscitation because he was
somehow not entitled to the so-called first class care of continued hospitalization and full
cardiac code status that others—particularly younger, white patients—would get.
The context of understanding hospice care or end-of-life decision making for this elderly
African American man reinforced his concerns that the motives of the health care
professionals and institutions might not be pure; in fact, he assumed them to be based on
his perceived marginalized status.
Similar themes emerged in conversations with African American pastors about potential
collaborations with a major cancer center and their churches to facilitate advance care
discussions and to disseminate information about hospice and palliative care to their
congregations. The pastors were concerned that the motives of the cancer center could
not be accepted at face value because of a past record of discrimination and mistreatment
against African Americans. Furthermore, they questioned why they should prioritize endof-life care when their congregations still did not have full access to state-of-the-art
cancer treatments, and the medical center seemed uninterested or incapable of recruiting
significant numbers of African American physicians to their staff. {Payne, Washington
Post Editorial, 2000}. 7
These stories are supported by more formal studies and observations of African American
attitudes toward the completion of living wills, appointment of health care surrogates and
utilization of hospice services. For example, in a study of cancer patients, by McKinley
and colleagues, it was observed that black patients desired “more life sustaining
treatments” and “were less likely to want to complete a living will at some time in the
future” than white patients from similar socioeconomic backgrounds. {McKinley ED et
al, 1996}. 8 Of note, blacks and whites were equally likely to express trust in the medical
system and in the action of their physicians, a result which was unanticipated by the
investigators.
However, in this study, blacks were at least twice as likely to endorse the belief that
“living wills increase a sense of hopelessness” and “decrease the quality of medical care.”
These findings suggest a relatively greater influence of spiritual concerns in African
American patients than in Caucasians, which will be discussed in more detail below.
Hopp and Duffy also studied differences in advance planning attitudes between blacks
and whites {Hopp FP, et al, JAGS, 2000}. 9 Like the McKinley et al study, they found
that whites were significantly more likely than blacks to complete a living will, to
designate a durable power of attorney for health care, and to discuss treatment
preferences before death, even when similar socioeconomic groups were compared. Also
similar to the McKinley findings, they noted that blacks as compared to whites were
more likely to desire “all care possible in order to prolong life.” However it is important
to note that these investigators also cautioned about overgeneralization, noting that many
African Americans in their study did participate in advance care planning activities and
did ultimately make decisions to limit treatment at life’s end. As recommended by them,
it is clear that palliative and end-of-life care services for African Americans should be
infused with cultural sensitivity, and advance care planning discussions should be part of
a larger communication strategy to understand preferences at the end of life in the context
of these cultural concerns.
In 2002, The American Association of Retired Persons (AARP), North Carolina division,
conducted an End-of-Life Care Survey, in collaboration with the Carolinas Centers for
Hospice and End-of-Life Care.
This survey evaluated more than 3500 people, 11% (382 individuals) of whom were
African American {Straw G, Cummins R, AARP study, 2003}. 10 The issues which
emerged as most important for African Americans are abstracted and listed in Table 1.
Table 1
Most Important Concerns of African Americans at End-of-life Care*
Category
Findings
• 76% of African Americans “somewhat comfortable”
Talking and
talking about death; most likely to attend funerals or
Thinking About
memorials of friends and relatives
Death
• Only 50% have talked with family about wishes for
end-of-life care; 20% have talked to no one; twice as
likely as whites to have spoken to no one about endof-life wishes
• Only 8% have talked with clergy and only 5% have
talked with doctors
End-of-life
Concerns
•
•
•
Pain
Management
•
•
75% said that “total physical dependency” would be
worse than death”; about 60% say that not being able
to communicate their wishes or living with great pain
is “worse than death”
About 50% fear dying painfully; 40% fear dying
from long illness (but less likely than whites to fear
dying painfully, from long illness, in an institution, or
alone)
64% concerned that they will be a burden
80% said they would only take pain medicine when
pain is severe; 66% would take the lowest amount
possible and save doses for later if pain became
worse
50% fear becoming addicted to pain medicines (more
likely to fear this than whites)
End-of-life Needs At least 80% of African Americans rated the following as
very important in dealing with their own dying
•
•
•
•
Being at peace spiritually (93%)*
Not be a burden (86%)
Knowing medicine was available (85%)
Honest answers from doctors (85%)
•
•
•
•
Advance Care
Planning
Having things settled with family (84%)
Being physically comfortable (83%)
Understanding treatment options (83%)
Being free from pain (80%)
*African Americans more likely to list this as their #1 need,
compared to whites, and more than 90% of African
Americans rated themselves as somewhat spiritual/religious,
compared to 83% of whites
• 66% of African Americans did not want to be on life
support machines, but only 30% had an advanced
directive to indicate this*
*This compared to 58% of whites with advance directive in
North Carolina
• 80% of African Americans said they heard of
Hospice Services
hospice, but only 15% knew Medicare pays for it.
• Almost 60% of African Americans who knew about
hospice said they would want hospice support when
dying
*Adapted from Straw et al. AARP End of Life Report, 2003 26
The most important conclusions of the North Carolina AARP study concerning African
American attitudes about end of life are that although 75% of those responding to the
survey said they were comfortable talking about death, only about 30% had expressed
their end-of-life concerns either formally or informally, and 20% had not talked to
anyone. This occurred despite 93% of the African Americans who responded identified
themselves as being spiritual or religious, and despite two-thirds of respondents saying
that they did not want to be on “life support machines.” The study’s findings are
consistent with other reports and suggest that, among other things, building on the
importance of spiritual concerns is an important element of end-of-life planning for
African Americans.
Another recent study reported on the results of focus groups of African Americans and
Hispanic-Americans concerning end-of-life care {Born et al, J Palliative Med, 2004}. 11
There was great similarity among the two ethnic groups and several common themes
emerged. There was a preference for family-provided care as long as caretaker burden
was not excessive. Spirituality was viewed as a primary means of coping and as part of a
holistic concept of care and well being of patient and family.
Generally spiritual concerns at the end-of-life center on the following points:
•
•
•
To make meaning of the experience
To receive recognition of the value of their lives
To have companionship
•
•
To die appropriately—safely, comfortably, and in a familiar setting
To be given hope for a way to cope through the experience.
Many patients express their spiritual concerns through their religious beliefs, but
spirituality is not synonymous with religion. A recent study reported on the spiritual
beliefs and practices in African American families in detail {Johnson et al, 2005}. 12
These investigators reviewed more than 500 literature citations spanning from 1966
through 2003 and reported on details of 27 studies bearing on views of spirituality and
illness, and 13 additional studies which evaluated African American views of spirituality
and treatment preferences. The results are summarized in Table 2.
Table 2
Spiritual Issues in EOL Care for African Americans
Spiritual Beliefs-General
•
•
•
•
Spiritual beliefs and practices are source of comfort, coping and support
(n=19 studies)
Spiritual beliefs are most effective way to influence healing (n=6
studies)
God is ultimately responsible for physical and spiritual health (n=6
studies)
The doctor is God’s instrument (n=3 studies)
Spiritual Beliefs-Related to End-of-life Concerns
•
•
•
•
Only God has power to decide life and death (n=6 studies)
Belief in divine intervention and miracles (n=4 studies)
Religious prohibitions against euthanasia, PAS, limiting life-sustaining
treatments and advance directives (n=10 studies)
Spiritual beliefs and practices are important source of comfort, coping,
guidance and healing (n=2 studies)
*Adapted from Johnson KS, et al. The Influence of Spiritual Beliefs and
Practices on the Treatment Preferences of African Americans. JAGS
2005;53:711-719.
These general beliefs expressed in Table 2 strongly influence end-of-life decision making
for some African Americans and must be understood by clinicians caring for them if true
collaborative management decisions are to be made.
It is important to understand whether cultural preferences of African American
physicians influence their counseling of patients and management decisions for their
patients during end of life. Although there are no studies which answer these questions
directly, Mebane and colleagues studied the influence of physician race, age and gender
on attitudes concerning end-of-life decision making {Mebane E et al, 1999}.13
These investigators mailed a survey to more than 500 physicians (157 black, 280 white)
and obtained a 28 per cent response rate. White and black physicians differed
considerably on the definitions of heroic care and the appropriateness of physicianassisted suicide as an option for end-of-life care. For example, 58 per cent of white
physicians saw “tube-feeding of terminally ill patients as heroic, but only 28 per cent of
black physicians agreed, and black physicians were more than six times more likely than
white physicians to request cardiopulmonary resuscitation and mechanical ventilation for
themselves when in a persistent vegetative state. With respect to physician-assisted
suicide, white physicians were more than twice as likely as black physicians to request
aid in dying when “hopelessly” brain damaged.
The Mebane study supports the previously noted differences in black-white attitudes
toward end-of-life care and suggests that these variations in cultural values and treatment
preferences should be taken into account as medical educational programs, palliative care
curricula and clinical practice guidelines are developed for end-of-life care.
In fact, the authors have been involved in the development of a palliative care curriculum
that targets clinicians serving African American communities. Called APPEAL® (A
Progressive Palliative Care Educational Curriculum for the Care of African Americans at
Life’s End), this program has eight modules which focus on explaining and teaching
many of the points raised in this paper through interactive teaching strategies, role plays
and didactic presentations designed for a multidisciplinary audience of health care
providers {See description of APPEAL curriculum}. 14 There is a specific module on
spiritual assessment and interventions for African American patients and another module
which details fundamentals of hospice care (see below). The curriculum has been taught
to more than 200 clinicians in the past two years.
Hospice utilization by African Americans
Palliative care is a model of holistic medical care, which highlights the importance of the
prevention and relief of suffering in seriously ill and dying patients, and accentuates the
connection of the patient and family as a focus of care. Hospice is the most complete
service delivery model of palliative care applied to dying patients and their families.
Although hospice and palliative care teams typically have chaplains as members and
include spiritual assessments and interventions in their management repertoire, these
aspects of care are often peripheral to the medical treatments offered. One might predict
that the knowledge, attitudes and opinions of African Americans described above would
be reflected in views of hospice care and actual rates of hospice utilization, and indeed,
there are correlations.
The consistent findings relating to relatively low rates of discussing end-of-life concerns,
completion of advance directives, and the underscoring of the value of the spiritual
dimension of care, all predict that hospice utilization rates in African Americans might be
lower than in whites. In fact, as reported by the National Hospice and Palliative Care
Organization (NHPCO), in 2004, African Americans represented fewer than 10 per cent
of the nearly 1 million Americans who utilized hospice care {NHPCO Fast Facts,
2004}.15 This is a much lower than expected rate of hospice utilization because African
Americans represent more than 13% of the total population and have higher mortality
rates than whites.
Several recent studies have investigated hospice usage by African Americans and other
minority groups in the United States. One study evaluated hospice usage in 23,000
deceased individuals using death certificates and interviews with relatives (the 1993
National Mortality Followback Survey, NMFS), and found an inverse proportional
relationship between hospice use and African American race/ethnicity and that was
“independent of income and access to health care.” It also showed, however, that cancer
diagnosis and the completion of a living will increased the chances that African
Americans would utilize hospice. {Greiner KA et al, 2003}. 16 Using similar
methodology to the NMFS, another study evaluated more than 1500 deaths in which 111
decedents were African American and asked families of non-hospice users if hospice had
been offered as an option. {Rhodes et al, J Pall Med, 2006}. 17 These investigators
found that 68 per cent of the African Americans had not used hospice services, and of
these, more than half had not been informed about the availability of hospice.
In fact, only a few (12 individuals, or 8.9 per cent) refused hospice even though
informed. This suggests that strategies to improve awareness of hospice services may
have great benefit in increasing African American access to this type of care.
Trust and Breech of Trust
Several studies have commented on the potential importance of mistrust in the health care
system as a barrier to more complete utilization of advance directives and hospice usage.
The hypothesis of the McKinley study cited earlier was that the black-white differences
in completion of advance directives could be accounted for by higher levels of “mistrust”
exhibited by African Americans patients. However they were surprised to learn that black
and white cancer patients were equally trusting of their physicians and the medical
system {McKinley, 1996}. 18
In fact, ethicists and clinicians have commented that the concept of “trust” may have
different connotations, and this may account for the unexpected answers reveled in these
studies {Mechanic D et al, 2000}. 19 For example, one can speak of dispositional vs.
situational concepts of trust. Dispositional trust refers to a culturally based attribute of
individuals or a population with exists a priori to any medical encounter. This is the sense
in which the concept of trust and mistrust is typically used when statements such as the
following are expressed: “the lack of trust and suspicion about the health care system is a
significant influence in shaping the attitudes of the African Americans with whom we
spoke {Hauser et al, 1997},” 20 or “Among African Americans, the reasons for [not]
completing formal advance directives ... may involve issues such as distrust of the
medical profession... {Murphy et al, 1996}.” 21
Conceptualizing the attitudes of African Americans as emanating from a sense of
dispositional mistrust mischaracterizes the situation and runs the risk of further alienation
by cultivating a posture of “blaming the victim.”
On the other hand, one can think of trust as an “iterative process, built over time through
experiences,” which is the foundation of the meaning of situational trust. This
conceptualization acknowledges that patients, families and communities make
conclusions about their physicians and the health care system by evaluating their
behaviors against their expectations and from their historical understanding to make
value judgments about the trustworthiness of people and institutions.
The differences in conceptualization of these two meanings of trust have important
clinical implications for end-of-life care. Dispositional mistrust implies that African
American patients and families should simply change their attitudes about end-of-life
care. Embracing the concept of situational mistrust demands that health care providers
behave in ways that engender confidence that they and the health system that they
represent will, in fact, behave in the best interests of the patients and families.
For example, better end-of-life care for African Americans starts by exploring concerns
about discrimination and marginalization within the health care system and acknowledges
the evils of past medical racism and the persistence of health care disparities that lead to
premature dying. It is in this context that more honest communication can occur and truly
collaborative end-of-life decisions can be made.
Strategies for the Way Forward to Improve End-of-life Care
You may write me down in history
With your bitter, twisted lies,
You may trod me in the very dirt
But still, like dust, I’ll rise
....................
Out of the huts of history’s shame
I rise
Up from a past that’s rooted in pain
I rise.
—Maya Angelou Still I Rise
{Maya Angelou, 1978} 22
Maya Angelou’s poem movingly captures the African American heritage of struggle and
triumph. We have discussed the sources of tension surrounding end-of-life care in
African Americans. There are also many positive developments resulting from innovative
and creative thinking and hard work represented by demonstration projects and other
programs aimed at providing culturally sensitive and high-quality palliative and hospice
care. Strategies for addressing better end-of-life care in African American communities
include:
•
•
•
the development of specific access and diversity programs in hospices to increase
the number of African American patients served
collaborations with faith communities to enhance spiritual caring and assist in
capturing earlier referrals for hospice and palliative care
the development of community-oriented hospice and palliative care programs that
provide medical and non-medical support for dying patients and their families and
which support earlier, non-crises referrals for end-of-life care
Programs resulting from these general strategies are described below.
Access and diversity initiatives in hospice and palliative care programs
The National Hospice and Palliative Care Organization (NHPCO) recently launched an
Access and Diversity Council, with a goal of providing resources to the more than 4,000
hospices in the United States to increase referrals for all underserved populations,
including African Americans. NHPCO has developed an Access and Diversity Toolkit,
which provides information and guidance to enhance cultural awareness of diverse
populations by hospice providers. In addition, many hospice programs have developed
their own access and diversity initiatives, resourced with staff charged with enhancing
culturally competent care by developing in-house training manuals and community
outreach programs.
The Balm of Gilead program in Birmingham, Alabama, is an example of a palliative care
program which serves a predominately African American population {Kvale E et al, J
Palliative Medicine, 2004}. 23 This program derives its name from an African American
spiritual and was funded by a Robert Wood Johnson Foundation Promoting Excellence in
End of Life Care Award. The Balm in Gilead end-of-life program was designed as an
inpatient service to overcome the barriers of providing care to Birmingham’s medically
underserved for whom outpatient and home-based models of care were inadequate.
Patients are admitted to the palliative care unit at Cooper Green Hospital who had been
hospitalized for more than seven days with a terminal diagnosis and who had medical
conditions likely to cause death within a short period of time.
Homelessness, lack of family support or caregivers and inadequate financial resources
were contributing factors in the care of most of the patients. Two-thirds of the patients
served were African American and more than 50% were Medicaid recipients. An
important feature of this program included the prominence of spiritual and community
support, including an Adapt-a-Room program in which local church congregations (half
of which were African American) and civic organizations furnished inpatient rooms,
visited patients and hosted social events at the palliative care unit. Evaluation of the
program indicated a very high degree of satisfaction with care, and patients recorded high
scores on the “transcendence/spiritual” domain of the Missoula VITAS scale despite
being very ill and debilitated. The Balm of Gilead program serves as a model inpatient
palliative and end-of-life care program for poor African American populations.
Unfortunately the program could not be sustained by local government and community
resources when the grant period ended.
Faith-community collaborations in end-of-life care
Recall that more than 90% of the African Americans who responded in the North
Carolina-AARP survey self-identified themselves as “very spiritual or religious” {Straw,
2003}. 24 As noted above, a major component of the success of the Balm of Gilead
program related to its inclusion of African American churches and the emphasis on the
spiritual dimension of end-of-life caring. Other programs have also focused on the
important role of faith communities in improving end-of-life care for African Americans.
For example, the Institute on Care at the End of Life at Duke Divinity School offers
regional community-based conferences called Crossing over Jordan © . These
conferences provide local education for communities connecting faith institutions
(especially black churches) with hospices and other community resources to provide endof-life care. Following a community readiness assessment, a day-long conference is
organized in which national experts in African American end-of-life matters join with
community speakers to provide educational talks and workshops. The program is
evaluated, in part, on the success of sustaining enduring networks and partnerships
between hospice and palliative care groups and faith institutions.
Recently the Duke Institute on Care at the End of Life partnered with VITAS Healthcare
Corporation, the largest for-profit hospice in the United States and Samuel D. Proctor, a
network of African American pastors focused on social justice and health ministries in
their congregations. This partnership has produced a covenant of care at the end of life,
which is reproduced in Appendix I. This covenant emphasizes the scriptural basis of
caring and counseling of church members in end-of-life matters and acknowledges the
need to work for improved access to all forms of health care, while attending to the endof-life needs of their congregations. One potential outcome of this collaboration is a
program to enlist members in several hundred congregations to train as spiritual care
volunteers in hospices throughout the nation.
Community-oriented palliative and end-of-life care
The Harlem Palliative Care Network (HPCN) and the Harlem Community Hospice
represent the intersection of churches and community organizations with hospice and
palliative care programs focusing on the needs of African Americans and other
underserved minorities in New York City. The Harlem Palliative Care Network (HPCN)
was established in 2002 as a result of a partnership between North General Hospital, The
Visiting Nurse Service of New York, and Memorial Sloan-Kettering Cancer Center
{Canning et al, 2005}. 25 The basic idea of this program was to establish a grassroots
network of service providers to interface with the palliative care program at the North
General Hospital, which serves the Harlem community.
Physicians, pharmacists, home care agencies, social advocacy and welfare groups, and
nursing homes were partnered in an informal relationship to identify patients and families
with five medical conditions—end stage renal disease, metastatic or advanced cancer,
chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), and endstage renal disease—and provide complementary services or social support for the
families with these conditions. Core staff of the HPCN consisted initially of a social
worker and an advanced practice nurse, who worked in collaboration with the inpatient
palliative care team at North General Hospital, and provided comprehensive assessments
of patients and families referred to the program. These assessments included the spiritual,
social, pain and symptom management and physical condition of the patient and resulted
in the formulation of a comprehensive end-of-life care plan.
In the course of the three-year program, 230 patients were referred to HPCN. Fifty-seven
percent of the patients were less than 65 years of age, and 75 per cent were African
American. This young age distribution, similar to that experienced in the Balm of Gilead
program, reflects the excess mortality of these medical conditions in the African
American community.
In the first year of the program, 25 of the of first 79 patients were enrolled for more than
6 months, attesting to the success in referring and maintaining patients with terminal
prognosis for length of stays that were much longer than conventional hospice programs.
Basic evaluation of HPCN included measures of pain relief, assessment of the location of
death and the degree to which advance care planning was accomplished. Patients referred
to HPCN did achieve satisfactory pain control, since 58 per cent of patients enrolled in
the program for 120 days reported pain scores of 4 or less, on a 0-10 numerical rating
scale. Most patients preferred to die at home, but this was achieved in only 16 of the first
64 deaths.
The most common reasons precluding the option to die at home were the absence of a
caregiver or the lack of a suitable home environment. In fact, 18 of the first 64 deaths in
HPCN involved individuals who had no caregiver. Advance care planning was done with
each patient on admission to the program and included life reviews, discussions of the
need for proxy decision makers or a durable power of attorney, review of resuscitation
status, guardianship issues and funeral planning. Of the first 111 patients, 19 designated a
health care proxy, 6 identified a durable power of attorney, 18 executed a living will, and
4 patients signed outpatient DNR orders.
Following conclusion of the grant support for HPCN, North General Hospital
administrators negotiated with a New York City hospice provider to license 14 beds and
established the Harlem Community Hospice as the first comprehensive inpatient hospice
unit for the Harlem community. This is the legacy of HPCN. (See Figure 1 below)
Figure 1
Harlem Community Hospice
The Harlem Community Hospice is a 14-bed inpatient unit, located on the 7th floor of
North General Hospital. The beds are licensed by the Jacob Perlow Hospice Program
of the Beth Israel Hospital in New York City. Dr. Stacie Pinderhughes (pictured) is an
African American board certified palliative medicine physician and geriatrician. The
hospice unit serves a predominately African American, Afro Caribbean and Latino
population living in East Harlem.
A corollary program to HPCN involved was established to provide sustainable support
for dying patients and their families within local churches in Harlem. This program was
called the Palliative Training and Education Program (PTEP), and involved the training
of 130 pastors and senior lay people to do bereavement ministries and support groups in
their congregations and to more effectively advocate for their church members when they
were in medical settings.
PTEP involved the teaching of a curriculum that covered topics such as the origin and
effects of health disparities; grief and bereavement fundamentals; advance care planning
concepts; basic issues in pain management and other common symptoms of terminal
illness; the fundamentals of good communication skills; the physical processes associated
with dying; the “how tos” of a hospital visit; establishing a memorial service; and
creating bereavement support groups in their churches, mosques or parishes.
The curriculum was taught in 3-hour blocks, twice a week for 12 weeks. More than 30
percent of PTEP trainees had a high school education or less, and 80 per cent were
African American. The trainees pledged to develop ministries in their churches to support
terminally ill patients and to do grief and bereavement care for families. In this way the
programs were able to sustain a core of “foot soldiers” to support patients and families
needing end-of-life care in their communities.
Summary
Major challenges face African American individuals and communities in the quest to
provide high-quality caring at the end of life. The tension caused by confrontation with
social injustice and racially based health disparities producing premature death can be
tempered with a focus on meeting the human needs of people who are suffering,
regardless of the cause or external circumstances.
Studies consistently find that African Americans are generally reluctant to execute
advance care documents given the lack of trustworthiness of the health care system in the
past, but when offered opportunities to plan appropriately and participate in end-of-life
programs that respect cultural values and the spiritual dimensions of care, African
Americans will actively take part. Future studies and initiatives should focus on
implementation of concepts and programs such exemplified in the Balm of Gilead project
and the Harlem Palliative Care Network which have demonstrated that effective
intersection of comprehensive palliative care plans and cooperation of faith communities
can result in the gift of dying well.
Appendix I
Covenant of Care at the End of Life
For I am persuaded that neither death, nor life ... shall be able to separate us from the
love of God, which is in Christ Jesus our Lord... — Romans 8:38-39
Whereas,
We are the image of God and every life has infinite worth
Whereas,
Each life has purpose and meaning
Whereas,
Care at the End of Life recognizes the continuing personhood of those who are in
transition despite the sorrow that the end of life can bring, we hold fast to the assurance
of the joy of Jesus.
And,
Whereas,
Persons of African descent have higher death rates and shorter life expectancies than
other ethnic groups:
Wherefore seeing we also are compassed about with so great a cloud of witnesses ...
—Hebrews 12:1a
Therefore, we covenant with one another to support and honor our dying by:
•
•
•
•
Recognizing our mortality and practicing ministries of presence and action that
overcomes the alienation of death which threatens to separate us from body,
community and God.
Advocating for justice and access in healthcare and delivery.
Modeling the compassionate and caring spirit of Jesus Christ.
Challenging our faith communities to foster greater awareness around death and
dying and quality end of life care such as hospice and palliative care to address
the continuing disparities of health care outcomes for African Americans which
have a negative impact on the well-being of our communities.
REFERENCES
1. Hayert DL HM, Murphy SL, Kung H-C. National Vital Statistics Report.
2006;54(13):1-20.
2. Morrison R, Meier D. High Rates of Advance Care Planning in New York City’s
Elderly Population. Arch Intern Med. 2004;164(13):2421-2426.
3. Woolf S, Johnson R, Fryer G, Rust G, Satcher D. The Health Impact of Resolving
Racial Disparities: An Analysis of US Mortality Data. Amercian Journal of Public
Health. 2004;94(12):2078-2081.
4. Johnson J. Go Down Death . New York: The Viking Press; 1927.
5. Crawley L, Payne R, Bolden J, Washington P, Williams S. Palliative and End-of-Life
Care in the African American Community. JAMA. 2000;284(19):2518-2521.
6. Payne R. At the End of Life, Color Still Divides. Washington Post. February 15, 2000,
2000.
7. McKinley E, Garrett J, Evans A, Danis M. Differences in end-of-life decision making
among black and white ambulatory cancer patients. Journal of General Internal
Medicine. 1996;11(11):651-666.
8. Hopp F, Duffy S. Racial variations in end of life care. JAGS. 2000;48(6):658-663.
9. Straw G, Cummins R. AARP North Carolina End of Life Care Survey. Washington,
DC: Knolwedge Management; 2003.
10. Born W, Greiner K, Sylvia E, Bultler J, Ahluwalia J. Knowledge, Attitudes and
Beliefs about End-of-Life Care among Inner-City African Americans and latinos. Journal
of Palliative Medicine. 2004;7(2):247-256.
11. Johnson K, Elbert-Avila K, Tulsky J. The Influence of Spiritual Beliefs and Practices
on the Treatment Preferenes of Afrian Americans:L A Review of the Literature. JAGS.
2005;53(4):711-719.
12. Mebane E, Oman R, Kroonen L, Goldstein J. The Influence of Physician Race, Age,
and Gender on Physician Attitudes Toward Advance Care Directives and Prefernces for
End-of-Life Decision-Making. JAGS. 1999;47(5):579-591.
13. Greiner K, Perera S, Ahluwalia J. Hospice Usage by Minorities int he Last Year of
Life: Results from the National Mortality Followback Survey. JAGS. 2003;51(7):970978.
14. Rhodes R, Teno J, Welch L. Access to Hospice for African Americans: Are They
Informed About the Option of Hospice? Journal of Palliative Medicine. 2006;9(7):268272.
15. Mechanic D, Meyer S. Concepts of Trust among Patients with Serious Illness. Social
Science and Medicine. 2000;51:657-668.
16. Crawley L. Guest Editorial. Palliative CAre int he African American Community.
Innovations in End of Life Care
Sept-Oct 3(5) [Sept-Oct, 2001; http:/www2.edc.org/lastacts/. Accessed May, 24, 2006,
2006.
17. Hauser. Cambridge Quarterly of Healthcare Ethics. 1997;6:58-71.
18. Murphy S, Palmer J, Azen S, Frank G, Michel V, Blackhall L. Ethnicity and Advance
Caer Directives. J Law Med Ethics. 1996;24(2):108-117.
19. Angelou M. Still I Rise. And Still I Rise . New York: Random House; 1978.
20. Kvale E, Williams B, Bolden J, Padgett C, Bailey F. The Balm of Gilead Project: A
Demonstration Project on End-of-Life CAre for Safety-Net Populations. Journal of
Palliative Medicine. 2004;7(3):486-493.
21. Canning EH, Payne R. Harlem Palliative Care Network. In: Ferrell BR, Coyle N, eds.
Textbook of Palliative Nursing. Vol 2nd. 2nd ed. New York: Oxford University Press;
2006:1139-1146.
COMMENTARY on African American Perspectives on Pain, Palliative Care and
End-of-Life Care
Commentary by September Williams, MD
Laguna Honda Hospital, San Francisco, CA
Palliative care and its final stage, hospice, represent one of the arenas of health care
disparities. Health care disparities result from a complex, sociologically nuanced, racebased triage system. In this system, peoples of color, particularly African Americans and
Hispanics, disproportionately have end-of-life care initiated in public long-term care
hospitals. Taken in aggregate, staffing in these settings is not at a full complement for the
acuity of care reflected in end-of-life diagnosis and palliative care. Inadequate staffing
diminishes the value of palliative care in the eyes of the communities using public
medicine, in part, because dying in public nursing homes and long-term care hospitals is
seen, prima facie, as a failure by most African Americans.
Drs. Crawley and Payne have underscored the disproportionately high-death rates
associated with the triaging of African Americans due to increased life-threatening
illnesses. These authors elucidate some nuances associated with the distrust of health care
systems, including palliative care in communities of color. Successful community-based
programs in end-of-life care, established during the late 1990s via philanthropic,
governmental, and faith-based communities, are enumerated. Many of these successful
programs evolved during the unprecedented Centers for Disease Control and Prevention
and philanthropic organizations’ commitment to community engagement via direct
community-based allocation of funding. Also highlighted by Crawley and Payne is the
grim reality that many of these programs are at risk or have ended due to insufficient
funding in the wake of shifts in fiscal policy.
The above represents the context in which the preferences around end-of-life care for
African Americans and Hispanic peoples have been shaped in the first half of this decade.
Exciting and significant in these reports is an emerging consensus that with increased
education, the majority of African Americans will use end-of-life services and advance
directives to clarify their preferences around dying. The movement to improve the quality
of end-of-life care can take credit for this shift in perspective.
The hospice units of public hospitals are charged with providing a safety net for the frail
elderly and other dying persons. Much palliative care for African Americans is
administered in long-term settings that are resource stressed and not necessarily in the
hospice units of those facilities. This care is implemented by interdisciplinary teams
whose patients’ diseases are at end stage. Often these patients are long-term residents.
Consequently, these hospitals are their homes, and they are entitled to hospice care in
their home environment.
As all humanitarian care, palliative care is dependent on presence and communication .
The interdisciplinary team (IDT) structure of long-term care is ideally suited to meet
these requirements of palliative care/hospice. The IDT typically includes social workers,
nurses, doctors, behavioral scientists, pharmacists, and clergy and chaplains. When
patients require more focused interdisciplinary care of this kind, very few facilities have
the coordinated interdisciplinary team to provide such caring unless a hospice referral is
made. As patients shift into the end-of-life phases, however, there is often no fiscal
capacity to provide the increased human resources needed in navigating the final stage of
life.
Pain management is the paradigmatic approach for team-based elimination of noxious
symptoms causing suffering near life’s end and is often at the heart of compassionate care
near life’s end. It is instructive to examine the intensity of resources required for
appropriate pain management and to juxtapose this against the reality of care afforded in
resource-stressed clinical settings, which are only able to supply minimal staffing.
Palliative care is intensive care for dying people, which when properly applied does not
necessarily cut the cost of end-of-life care; it improves the quality.
Quality pain management requires holistic evaluation and intervention including: 1)
establishing a pain-rating system consistent with the patients capacity to express levels of
pain; 2) physical exams providing clues to the physiologic causes and types of pain; 3)
initiation of interventions in several modalities, including medications and nonpharmacological approaches such as psychological support, and spiritual care, and 4)
evaluating the efficacy of the interventions in time-sensitive intervals. Each therapeutic
intervention must be reassessed utilizing the tried and true palliative care approach of
appraising: 1) the adequacy in eliminating the symptom; 2) adverse effects on activities
of daily living; 3) aberrant usage; and 4) the patient’s underlying psycho-physiological
potential for addiction.
Addiction potential is a significant area of concern for African Americans as noted by
Crawley and Payne. Assessment of aberrant drug use behaviors in patients taking opioids
for pain management becomes relevant at the end of life, however, in only small groups
of patients. African Americans who are dying from complications of AIDS and who
acquired HIV as a result of intravenous drug use are part of such a population.
Naive health care provider assumptions that dismiss unassessed addiction potential are
likely to be suspect by individuals aware of families and communities that have been
dismantled by substance abuse. It is not enough to say, "Pain medication will not cause
addiction when used against real pain." Reducing the fear of addiction potential near
life’s end, however, is an appropriate clinical goal of care.
Additionally, without an assessment of addiction potential, patients may be undermedicated, plagued by the effects of rapid development of tolerance, or medicated with
inappropriate combinations of medications. For example, patients on methadone
maintenance should have their historical methadone maintenance dose considered as a
physiological baseline, not as pain medication. The addition of more methadone versus
other opiates for increased pain is weighed against risks of extremely long half-lives and
increased adverse effects associated with high-dose methadone use. Individuals with
documented addiction potential may respond better to one form of breakthrough
medication than another and require shorter dosing intervals. An improved understanding
of addiction science and behavior is necessary to address the expressed concerns of
African Americans around pain and symptom control near life’s end.
In the context of a system overwhelmed by end-stage diseases of disparities, providing
fiscal support for adequate palliative care is fundamental to its expanded use. There is a
Medicare and Medicaid hospice benefit that provides fiscal support for palliative care.
In communities victimized by health care disparities, the age of patients with end-stage
illnesses is ever decreasing. This changes the long-term care environment substantially,
which is traditionally funded based on skilled nursing for the geriatric peer group.
In part, the evolution of hospice derives from a volunteer movement. In communities
tattered by health care disparities, volunteer capacity, as clinical professional capacity, is
frequently outstripped by palliative care need. Palliative care requires intensive
multidisciplinary care for dying people. While working to prevent more people of color,
and the poor in general, from dying of end-stage diseases, the need for greater fiscal
support of palliative care/hospice must be recognized. The best hope for providing
quality end-of-life care for African Americans at life’s end is providing more equitable
access to high-quality end-of-life care.
Palliative & Hospice Care in HIV/AIDS–A Community Care Perspective
William Johnson, MD
Luke Care Center
VITAS Healthcare Coporation
Chicago, IL
Bethsheba Johnson, MSN, CNS, GNP-BC
Luck Care Center
Chicago, IL
Pernessa Seele
Balm In Gilead
New York, NY
Palliative & Hospice Care in HIV/AIDS–A Community Care Perspective
A Clinical Viewpoint
William Johnson, MD
Bethsheba Johnson, MSN, CNS, GNP-BC
INTRODUCTION
First described in 1981 as Gay Related Immune Deficiency (GRID), end stage Human
Immunodeficiency Virus (HIV) infection or Acquired Immune Deficiency Syndrome
(AIDS) has presented some of modern medicine’s greatest challenges and triumphs.
Human immunodeficiency virus is the virus that causes AIDS. In the 1980s someone
with the diagnosis of AIDS was not expected to live for more than two years.
Medications at the time were geared toward management of opportunistic infections
(infections that take the opportunity to attack the immune system when not working
well), prophylaxis (prevention through antibiotics) of pneumocystis carinni pneumonia (a
serious pneumonia known to persons with HIV), and symptom management.
Over the past two decades there have been tremendous advances in treatment of HIV
infection with the advent of anti-HIV or highly active retroviral therapy (HAART) and
improved treatments of opportunistic infections. Along with the advances in treatment
there have been a remarkable decrease in deaths, hospitalizations, and disability from
HIV. Despite these advances in medical therapy and increased life spans of persons living
with AIDS, there remains a disproportional death rate of persons of African descent
diagnosed with HIV. Persons of African descent not only lead the United States in the
number of new cases of AIDS, accounting for more than 50% of all new cases, they also
account for more than 50% of deaths from AIDS. 1
Yet people of African descent only comprise approximately 13% of the general
population. Persons of African descent should not be considered a monolithic cultural or
social community. Persons in this community include immigrants, such as Haitians,
Jamaicans, Africans, and others who were not born in the US and may or may not be
naturalized citizens, as well as the African Americans who trace their lineage to slaves or
freeman of pre-Civil War America. And HIV/AIDS affects every economic and
educational level.
The Centers for Disease Control and Prevention (CDC) also reports that AIDS remains
the number one cause of death for men of African descent ages 25 to 44. 2 While these
statistics remind us of the continued need for improved access, prevention, and advocacy,
they also highlight the need for good palliative care.
Palliative care is comprised of multi-dimensional services that mitigate one’s transition
from the “cradle to the grave.” It can include pain management, care, and concern for
human suffering-physical and mental, and loss and bereavement. According to the World
Health Organization, palliative care is defined as “the active total care of patients whose
disease is not responsive to curative treatment. Palliative care
•
•
•
•
•
•
affirms life and regards dying as a normal process,
neither hastens nor postpones death,
provides relief from pain and other distressing symptoms,
integrates the psychosocial and spiritual aspects of patient care,
offers a support system to help patients live as actively as possible until death,
offers a support system to help the family cope during the patient’s illness and in
their own bereavement.
The goal of palliative care is to achieve the best quality of life for persons who are living
with diseases that are non-responsive to curative treatment, while offering support to
family members and/or significant persons who are care providers.
Recent reports appear to confirm what HIV care providers have felt to be true-which is
that low CD4 (an important immune system white blood cell) counts increase risk of
death from not only AIDS and/or opportunistic infections but also from heart disease,
malignancy, and liver disease. 3 This increase in death due to non-HIV diagnoses
presents an added challenge to the HIV provider to not only treat HIV, but also to
consider co-morbidities (such as hypertension and diabetes) in the prognosis of these
patients’ health.
The primary care provider plays an important role in the community in recognizing this
need and understanding the coalescence of medicine, spirituality, and social services.
Care should be coordinated within a multidisciplinary team comprised of physician, nurse
practitioner, case manager, substance abuse counselor, mental health counselor, pastoral
care, and peer coordinator, such as similar teams at the Luck Care Center.
Background of the Luck Care Center
On the Southside of Chicago in the mid-1990s, there began to emerge startling numbers
of HIV-positive people of African descent. This was especially alarming to the
community of Roseland, located 13 miles S of the Loop of Chicago. Roseland was a
neighborhood whose origin until the 1960’s was primarily of Dutch descent, an area of
blue collar workers from the railroad, steel and automobile industries.
The area thrived into the 1960’s even with its newfound diversity from the migration of
African Americans families to the area. However, when inflation hit in the 1970’s
followed by the collapse of the aforementioned industries, it left this new migrant of
community residents without stable employment.
The education system struggled, businesses left for the suburbs, community institutions
that had helped residents in earlier times when the area was mostly white, had now
abandoned it new Roseland residents. The outcome was the economic decline of a once
thriving community. This also resulted in the flight of working class blue and white collar
African Americans from the area. The end result ... a community broken shattered and
forgotten. Sadly today, 70% of the residents are now on public assistance.
During the initial diagnosis in the late 1980’s most of the HIV positive persons were gay
white men. However it became apparent that this horrific disease did not discriminate.
The Centers for Disease Control and Prevention provided the following fact sheet on
AIDS in 2004. 4
1. African Americans accounted for 20,965 (49%) of the 42,514 estimated AIDS
cases diagnosed in the United States (including US dependencies, possessions,
and associated nations)].
2. The rate of AIDS diagnoses for African American adults and adolescents was 10
times the rate for whites and almost 3 times the rate for Hispanics. The rate of
AIDS diagnoses for African American women was 23 times the rate for white
women. The rate of AIDS diagnoses for African American men was 8 times the
rate for white men].
3. The 178,233 African Americans living with AIDS in the United States accounted
for 43% of all people in the United States living with AIDS].
4. Of the 48 US children (younger than 13 years of age) who had a new AIDS
diagnosis, 29 were African American].
5. Since the beginning of the epidemic, African Americans have accounted for
379,278 (40%) of the estimated 944,306 AIDS cases diagnosed.
6. From the beginning of the epidemic through December 2004, an estimated
201,045 African Americans with AIDS died.
AIDS hit the Roseland area like a thunderbolt! Fear of stigmas associated with the virus,
denial and limited information from the onset has left the community of Roseland
devastated. Although it is a community cloaked in plight, it is nonetheless a community
and one that is in dire need of good quality care, education and support for its residents.
Sherry L. Luck, MD, an African American board-certified internal medicine physician,
had a vision of providing care for HIV-positive patients and their families in this
underserved area of Chicago. Through diligence and preservation in economically
daunting times, Dr. Luck’s vision was realized. Dr. Luck was able to sustain an in-patient
HIV clinic at Roseland Community Hospital through her own personal funds and from
community fundraisers until the clinic received funding through the Ryan White Care
Act. The Ryan White Care Act is federal funding for persons living with HIV who were
uninsured. Dr. William A. Johnson became the medical director of the newly rededicated
Luck Care Center after Dr. Luck’s sudden death in May 1999.
The Luck Care Center is a private not-for-profit HIV/AIDS clinic. The staff is 100%
persons of African descent as well as the board of directors. The clinic provides HIV
primary care to approximately 200 patients, of which 98% are of African descent.
Services include medical management of HIV and other illnesses, such as diabetes (sugar
diabetes), hypertension (high blood pressure), mental health counseling, substance abuse
counseling, nutrition counseling, prevention counseling for sexually transmitted
infections, pastoral and bereavement care, massage and chiropractic therapy, case
management, support groups, and peer education.
The Case Study: Part I
To put a face on HIV/AIDS, follows the history of a patient from the community.
Mrs. S, a 44-year-old woman of African descent, presented an AIDS diagnosis at the
clinic in 2000. She is a professional woman working on the Southside of Chicago. Prior
to this meeting, Mrs. S decided to visit a local hospital that was educating people to the
threat of HIV in African American communities through a free HIV testing day.
Although Mrs. S thought she had not engaged in high-risk behaviors, because she was
married with five children, she decided to have the HIV test. Mrs. S’s test for HIV was
repeatedly reported as positive. It was clear that Mrs. S was seething with anger when she
was referred to the Luck clinic; she came in for her first visit in great psychological pain,
frightened and spiritually wounded. Even in her anger she encouraged her husband to get
tested and the outcome of his results was even more distressing. Her husband was not
only HIV positive, he had AIDS. Both Mrs. S and her husband were full of despair and
anger. Why me God? was the question she kept repeating out loud during her visits to the
clinic.
The burden was too much; she lashed out at her husband in anger and demanded that he
leave their home. He in turn suffered a mental breakdown and had to be placed in a
locked psychiatric unit and placed on psychotropic medications.
When Mrs. S husband was later discharged on antidepressants and antipsychotics, Mrs. S
reluctantly accepted him back into their home with the provision that he get HIV
treatment. After he returned to work, a few months later Mr. S was fired from his job; this
left Mrs. S as the sole provider for the family. It was very difficult for Mrs. S to come to
the clinic for routine care, she herself was a medical professional and her fear was that
she would run into people who knew her and suspect that she was seeking treatment. She
was very afraid of the stigma of HIV and the possible discrimination by others and her
church; these feelings brought on increased anguish and anxiety for Mrs. S. Social
complications and privacy concerns are still very real in communities of color and
oftentimes prevent patients from being tested and/or treated. Mr. and Mrs. S began to
take antiretroviral (anti-HIV) medication. Mrs. S had HIV but no symptoms of the
infections.
Even though the HIV infection was stable, Mrs. S did develop several problems over the
course of her treatment that was not related to HIV. The first problem was a blood clot in
her leg that caused a great deal of swelling and pain.
Pain and Persons of African Descent
Since the beginning of the HIV epidemic, clinical studies have documented a high
prevalence of pain in patients with AIDS. 5 Numerous studies also have shown pain to be
underreported and underrated. 6, 7
Pain in AIDS patients can be due to opportunistic infections (headaches from meningitis
or abdominal pain from disseminated Mycobacterium avium Complex-a tuberculosis-like
illness disease-from HIV itself as in neuropathy, medication related, or the effects of
chronic debilitating illness.
The approach to treating AIDS-related pain is similar to any chronic debilitating illness.
First and foremost a detailed and thorough history and physical is mandatory. An
assessment of pain should include location, radiation, timing, quality, severity,
aggravating factors, relieving factors, previous therapy, and impact on the activities of
daily living. The pain assessment requires very good communication skills, active
listening, observation, and knowledge of how pain is managed culturally. There are
generational issues that providers should consider, for example, stoicism regarding pain
is perhaps a factor that may inhibit patients from letting the provider know they are in
pain. Elders of African descent may view pain as a way of life; to withstand it without
complaining reflects strong character. Their spiritual and religious foundations contribute
to their high tolerance for pain, which prayer can alleviate and “laying on of hands.”
Once a thorough assessment is done a treatment regimen can be established. Frequent
documentation of pain assessment and reassessment of pain is essential. Pain assessment
includes determining a pain rating. Using a 0 to 10 pain scale, with 10 being the worst
pain experienced. Pain scores can then be compared to determine effectiveness of
therapy.
Pain scores should be taken at each visit and recorded. Pain management of persons of
African descent in the community clinic, with a large proportion of patients with
substance abuse histories, requires a great deal of trust, patience, and documentation.
Since pain is a very subjective experience, prior to therapy guidelines must be established
and shared with the patient. Pain contracts which explain medication prescribed, the
pharmacy to be used, how often medication can be refilled, and policy on lost or stolen
prescriptions are often utilized and renewed annually.
Also, consultation with an addiction specialist if a patient is on methadone maintenance
therapy is mandatory, if a patient is to start opiate therapy for pain control. Pain
assessment includes a determination of the type of pain: muscular, bone, internal organ,
or nerve pain. Muscular and bone pain occur as a result of tissue injury (somatic).
Pain from internal organs can result from stretching, distension, or inflammation of the
internal organs of the body. This pain usually is well localized and may be described as
sharp, dull, aching, throbbing, or gnawing in nature and typically include bones, joints,
and soft tissues.
Nerve pain occurs as a result of injury to peripheral nerves or central nervous system
structures. Nerve pain may be described as burning, shooting, tingling, stabbing, or like a
vise or electric shock and affects the brain, central nervous system, nerve plexi, nerve
roots, and peripheral nerves.
A full assessment of pain is important in determining the correct therapy. One set of
accepted and excellent guidelines are the World Health Organization’s, which state that
treating pain with a rating of 1 to 3 starts with acetaminophen or nonsteroidal antiinflammatory drugs (NSAID); 4 to 6, with narcotics combined with acetaminophen; and
ratings 7 to 10 requires strong narcotics.
Examples of strong narcotics include morphine and oxycodone. After determining
appropriate medication and dosage, reassessment of pain is essential at every visit. Pain
therapy also depends of types of pain. Muscle and bone pain most often responds to
NSAID and narcotics, whereas nerve pain often requires narcotics along with adjunctive
therapy of tricyclic antidepressant, anticonvulsants, and steroids.
HIV neuropathy (nerve pain) poses several challenges to the HIV provider and can be
difficult to control. This pain is due to peripheral nerve injury caused by HIV or
medication used to treat HIV infection-particularly the thymidine analogue nucleoside
reverse transcriptase inhibitors (didanosine, stavudine, and zalcitabine).
Pain is described as numbness, burning, and tingling. This pain is oftentimes severe and
constant. HIV neuropathy is a significant cause of disability in HIV patients with
advanced disease. Drug therapy of HIV neuropathy should start with acetaminophen or
NSIAD. Many patients will require acetaminophen with codeine or acetaminophen with
hydrocodone for relief.
Adjuvant therapy with gabapentin has proven to be highly effective and shows
superiority to tricyclic antidepressants. 8 Neuropathic pain is chronic and largely
irreversible and requires chronic therapy often using multiple medications alternative
therapies such as acupuncture.
The Case Study: Part II
Although Mrs. S suffered in pain from the blood clot she did not want to have her leg
examined by another physician and she refused diagnostic tests because she was afraid
that once it was revealed that she was HIV positive, her treatment and the physician’s
perception of her would change. At this time, Mr. and Mrs. S had not disclosed to anyone
outside of their families that they were both HIV positive.
Symptom Management
Symptoms other than pain in patients with late-stage HIV disease can be managed
successfully in a community-based practice. Some of the common symptoms experienced
include constitutional symptoms (fatigue/weakness, anorexia, and fevers), gastrointestinal
(nausea/vomiting, diarrhea, and constipation), respiratory (dyspnea, cough, increased oral
secretions), dermatologic (skin rash, pruritis, and decubiti), and neuropsychiatric
(delirium, dementia, agitation, and depression).
Causes of fatigue and weakness are numerous in patients with AIDS and often treatable.
Patients with long term anemia (low blood) secondary to renal failure, medications, and
HIV often complain of weakness and fatigue. Treatment of anemia with epoetin once
weekly, and transfusion for hemoglobin of less than eight are accepted and effective
therapies. Other efforts also include discontinuation of medications which cause anemia,
i.e., AZT. Fatigue secondary to opportunistic infections and AIDS may respond to
stimulants such as methylphenindine, if the infection is going untreated.
Case Study: Part III
Mrs. S developed anemia, which at first was thought, to be related to her HIV
medication. She was complaining of fatigue and weakness, which was making it very
difficult for her to work. Mrs. S was taken off of her HIV medication to see if that was
the cause of her anemia and put on iron and epoetin once weekly in an attempt to increase
her red blood cells (hemoglobin).
Unfortunately, that therapy had no effect, so she was referred to a hematologist
(physician who specializes in blood disorders), but she refused to go because she did not
want to disclose that she was HIV positive. Her symptoms were so severe that she
became short-of-breath and could hardly get out of the bed to care for her children, nor
could she go to work. She had to be admitted to the hospital where she received multiple
blood transfusions, but she still did not disclose her HIV status to the physician.
At the Luck Care Center considerable time is spent discussing with the patients the
importance of disclosure of their HIV status to sexual partners, physicians, dentists, etc.
The Luck Center provides ongoing support in group settings and privately if that is the
patient’s preference.
Gastrointestinal symptoms are varied and common. First steps are assessment of
symptoms. Difficulty swallowing is most often secondary to yeast infection in the throat
and esophagus and most often can be treated with oral flucanozole. Also canker sores
(sores in the mouth) can be a cause of difficulty swallowing and can be treated with
corticosteroids like prednisone. Nausea and vomiting is commonly caused by oral
medication, and therefore all medications should be reviewed and unnecessary
medications stopped. Other treatments include metoclopramide, phenothiazines, and
antacids. Phenothiazines are particularly useful since they can be given by multiple routes
(oral, rectal, or intravenously). 9
Respiratory symptoms are common in the late stages of AIDS. Pneumonia (community
acquired, pneumocystis or other opportunistic infections), pneumothorax and severe
anemia are all causes. Treatment includes supplemental oxygen in most cases. Morphine
sulfate in low doses and/or anxiolytic agents to alleviate air hunger is very effective.
Antibiotic therapy may be warranted if pneumonia is suspected or diagnosed.
Terminal delirium, depression, and anxiety are neurologic symptoms that HIV providers
have
to be able to address with their AIDS patients. Phenothiazines such as haloperidol are
used in moderate to high doses, which may be required to treat delirium in the terminal
AIDS patient. Inpatient care may be required for treatment and safety reasons.
Appropriate therapy also includes patience, reassurance, and frequent visits by health
care personnel. Along with what has previously been stated, treatment of depression and
anxiety follows the traditional therapies and may require psychiatry referral.
Dermatologic conditions are seen in every stage of HIV infection but become
increasingly more problematic as the CD4 count decreases. Dry, itchy skin is seen in
most patients with end-stage HIV infection and is a major complaint. Treatment of skin
rash-often times seborrhea dermatitis-relieves itching. Skin infections may require
systemic antibiotics and are typically easily treated.
Opportunistic Infections
While the incidence of opportunistic infections (OIs) has decreased in the United States
due to the use of HAART, there are still a significant number of OIs in the patient
population. Consequently patients with terminal disease may also need treatment of these
infections for symptom management. There are several common conditions treated at the
Luck Care Center worthy of discussing in terms of their etiology, clinical manifestations,
diagnosis, and treatment.
Pneumocystis jiroveci pneumonia (PCP) occurred in 70% to 80% of patients with AIDS
before the widespread use of HAART.10 The most common clinical manifestations of
PCP are fever, progressive shortness of breath, nonproductive cough, and chest
discomfort. Low oxygen level in the blood is the most characteristic laboratory
abnormality. Diagnosis usually requires bronchoscopy with bronchoalveolar lavage.
Treatment with trimethoprim-sulfamethoxazole is preferred and can be given orally in
mild to moderate cases. Dapsone, primaquine plus clindamycin, intravenous pentamidine,
and atovaquone suspension are alternative therapies in patients allergic to sulfa drugs. 11
Other infections include a brain infection known as Toxoplasmosis which can cause
fevers, headaches, and seizures. Treatment with oral medication is also available.
Another brain infection known as Cryptococcus can also lead to fevers, headaches,
seizures, and weakness. Treatment is with antifungal medication and can also be taken by
mouth. Both of these infections require hospitalization and a spinal tap.
Hospice and HIV
During the early days of the HIV epidemic hospice care was often times needed. OIs
were common and the cause of death for many HIV-infected patients. Antiretroviral
therapy and prophylactic medication are responsible for the declining death rate from
OIs, while death from cardiac causes, liver failure and non-HIV-related malignancies are
increasing in percentage.
Traditional criteria for prognosis of less than six months include CD4 count of less than
25, weight loss of greater than 10% of normal body weight or body mass index (BMI)
less than 21, serum albumin less than 2.5, CNS lymphoma, toxoplasmosis,
cryptosporidiosis, progressive multifocal leukoencephalopathy, renal failure, and CHF.
Patients with advanced HIV who refuse antiretroviral therapy or who are unable to
tolerate it due to side effects, highly resistant virus, and advanced liver disease also may
have prognosis of fewer than six months and can be referred to hospice.
Selwyn et al have reported in a study conducted in 2000 to 2001 that the only variables
that did predict risk of dying were markers of impaired functional status, such as
Karnofsky score, MMSE, and deficits in daily living. 12
Hospice consists of an interdisciplinary care team which includes a physician, nurse,
social worker, and chaplain. Also included are a nutritionist, home health aide, and other
health care personnel. Care of the patient revolves around the needs of the patient and
family. Personal care provided by the home health aide has been sited as one of the most
significant aspects of hospice care for the terminal AIDS patient in surveys of families.
There are four levels of care: home care, inpatient care, continuous care, and respite care.
Medication and other treatment related to the terminal diagnosis are covered by hospice.
Hospice care for HIV patients works best when the HIV provider remains active in the
care of the patient through death. Patients and families become accustomed to the
specialized care and expertise of the HIV provider. Experience shows continued
antiretroviral therapy, MAC prophylaxis, PCP prophylaxis, CMV prophylaxis,
cryptococcal prophylaxis, and frequent office or home visits are oftentimes essential for
psychological, social, spiritual, and physical comfort, which is the essence of hospice
care.
While conventional wisdom would have the provider to stop all antiretroviral
medications, recent reports tend to show that despite multi-resistant virus being present in
heavily treated patients, most patients would still benefit from continued antiretroviral
therapy.
However it is likely that patients with end-stage AIDS are no longer on antiretroviral
therapy or have never been adherent to their ARV regimen. Also continuation of PCP
prophylaxis, MAC and toxoplasmosis prophylaxis allows for avoidance of opportunistic
infections.
Hospice care also provides bereavement services for friends, family, and loved ones. It is
equally as important to provide bereavement services to staff members who are usually
very involved in the patient’s care. To this end there are annual memorial services
remembering patients who have died during the previous year. Former patients’ families
are invited as well as current patients.
There are typically family members from years past who participate in the service and
express their appreciation for the clinics services. Hospice care provides needed support
for patients, which is particularly important for some of the HIV infected who have not
disclosed their condition to their family and friends or who have been otherwise isolated
because of their disease.
Case Study: Part IV
After continuous pleading with the patient to disclose her HIV status Mrs. S was finally
convinced that it was paramount that she make known her HIV status to the hematologist.
While she was in the hospital for another blood transfusion she gave permission to
verbally confirm her HIV status to her hematologist over the telephone. She was crying
over the phone; it was a huge relief and turning point for Mrs. S to release this heavy
burden.
After several diagnostic tests it was found that she had leukemia (a blood cancer).
Mrs. S had to undergo chemotherapy to try and stop the growth of cancer and she
developed horrific and painful side effects.
The first couple of cycles of chemotherapy were not effective, so her children begged her
to try it one more time; unfortunately this did not stop the cancer. During her treatment
for the leukemia, Mrs. S’s husband left their home.
It was then suggested by the physician treating her leukemia that she consider hospice as
an option for care. The physician informed Mrs. S and her family that the care she
received from hospice would mange her pain, and assist them with her daily care. Since
traditional therapy had not improved her condition and that all options for treatment had
been exhausted she agreed to be admitted to hospice. As it turned out Dr. Johnson, the
internal medicine physician for the Luck Center is also a medical director for a hospice
company in Illinois. The hospice team managed Mrs. S’s severe pain, they also addressed
her psychosocial, and spiritual needs. This brought her solace during her final days and
she died in her home with dignity and in comfort with her family and friends at her side.
The Luck Care Center honors the memory of Dr. Sherry Luck, the founder of the center
and patients each year with a memorial service in the community she faithfully serviced.
In May 2006 the center honored Mrs. S along with the numerous other patients that the
Center serviced throughout the year. These services give the family member(s), friends
and the staff a setting in which they can fellowship and come together, emotionally,
spiritually and sometimes physically to reflect and honor the memory of their loved ones
and former patients.
At the Luck Care Center, providing counseling for spiritual distress is a very important
component of the comprehensive care for the Center’s HIV positive patients and their
families. In the next segment of this chapter Ms. Pernessa Steele will discuss the
important role of the church in the providing spiritual care for persons of African descent
with HIV/AIDS.
A Faith Perspective and Initiative
Pernessa C. Seele
Founder/CEO, Balm In Gilead
Terrie E. Griffi, DMin
THE BALM IN GILEAD
“Years ago, when I was working at Harlem Hospital, I was stunned by the sight of people
and families suffering from AIDS amid a seemingly heartless community that neither
understood the reasons for their pain, nor sought to alleviate their suffering. It was
revealed to me that what was missing was the faith imperative-the directive from
religious leaders to their congregations to learn, act, and care as their Lord would expect
of them in the age of HIV/AIDS”.
Pernessa C. Seele
The Balm in Gilead was established to develop educational and training programs
specifically to meet the needs of faith communities that attempt to become compassionate
centers for HIV/AIDS ministries and education. Today, thousands of Black churches
throughout the community are delivering AIDS education and direct services to those
infected with HIV, and spiritual care to all affected by this epidemic. The Balm In Gilead
spearheads a dynamic response to the AIDS crisis in the Black community.
How has the Balm In Gilead accomplished such a monumental feat in such a short time?
It was clear the center had to develop educational and training programs specific to the
needs of faith communities. Under the umbrella of the Balm In Gilead and with the
tireless commitment from the staff and the community at large, the center developed
various programs to address this pandemic crippling our communities.
Balm In Gilead Programs
•
The Black Church Week of Prayer. The Black Church Week of Prayer for the
Healing of AIDS is a week-long education and awareness campaign highlighting
the role of the black church in addressing the AIDS crisis. This campaign serves
to pave the way for the continuous delivery of prevention education and services
to the African American community via faith communities.
•
•
•
•
Our Church Lights The Way-HIV Testing Campaign. The Black Church HIV
Testing Campaign engages the support of black ministers to empower and support
individuals to be tested for HIV.
Faith Based HIV/AIDS National Technical Assistance Center. The Balm In
Gilead operates the nation’s only HIV/AIDS technical assistance center designed
specifically to serve churches as well as public agencies and community-based
organizations that wish to work with black churches on AIDS issues. The
purposes of the National Faith-Based HIV/AIDS Training & Technical Assistance
Center are:
To enhance the ability of black churches to respond to HIV/AIDS by providing
capacity building and technical assistance services;
To increase the cultural competence of public health professionals as well as
medical and other direct service providers to work appropriately and effectively
with the black faith community.
Black Church HIV/AIDS Training Institute
The Black Church HIV/AIDS Training Institute is designed to convene pastors, deacons,
missionaries, church school educators, youth ministry leaders, church nurses, and other
auxiliary leaders of the black church to examine, discuss, and seek solutions that
effectively address the continuing impact of HIV/AIDS on black people. At the Black
Church HIV/AIDS Training Institute, we invite all church ministries to re-dedicate
themselves to the critical role of leader as we seek God’s guidance in living through this
sad hour of history, when more than 25 million people with HIV/AIDS in the world today
are African or of African descent.
Palliative Care and the Role of the Church for Persons of African Descent
Untimely death is a seemingly common element of today’s society. It is no longer just the
last rite of passage of the elderly but a constant presence of violence and incurable
diseases that strike the young and old-a multitude of life threatening illnesses, suicides,
and homicides. Perhaps not since the days of slavery and lynching in the public square
have the lives of African Americans seemed to be so dispensable. Emotional suffering,
loss, and bereavement are common elements of life in our communities today.
Compounded by the stigma associated with HIV/AIDS, parents, and children are
choosing to die silently from loss and grief as they sit quietly inside and outside our
church doors.
The role of the African American church in palliative care, though historically it may not
have been seen as such, is based on a holistic model of care. Holistic care embraces the
total person-physically, spiritually, and emotionally. However, one cannot make inquiries
into the role of the African American church in palliative care without taking into
consideration the role of the leader of the church, the pastor.
Since the term pastor is derived from the word shepherd, this metaphor is important in
understanding the nature of pastoral ministry. The image of God as shepherd in Psalm 23
is a reflection of the character of God and the certainty of God with us. In some religious
traditions and denominational distinctions, ministerial leadership roles may be referred to
as bishop, elder, priest, or overseer. He or she is the one who has been called and
commissioned by God to serve the people of God and to “ equip the saints for the work of
ministry, for the building up the body of Christ” ( Ephesians 4:12 RSV). Pastors have
been given the ministerial office to occupy in a representational role on behalf of the
church. The pastor fills a powerful symbolic role as he or she ministers to and with the
congregation of God’s people.
Recognizing that both pastor and people are in ministry together, there are four critical
components that I believe guide the role of the African American church in palliative
care:
•
•
•
•
Pastoral preparation and leadership
Pastoral counseling and care
Ministerial support and advocacy
Prayer
1. Pastoral Preparation and Leadership. I will give you shepherds after my own
heart, who will feed you with knowledge and understanding. Jeremiah 3:15
NSRV.
The pastor and a cadre of those called to the ministry of care, work in tandem to
provide compassionate care to persons as they go through the various stages of
life, which inevitably includes pain and suffering, loss, and bereavement.
The pastor is the theologian-in-residence of the church and must embrace
palliative care with skill and knowledge to affirm life with all of its many
challenges. The essential preparation of the pastor enables him or her to think and
see clearly all of the components of an individual’s life without judgment and/or
criticism. The pastor must have the capacity to offer insights and give direction
through the prism of an inclusive loving God to those who serve with him or her
in ministry and to those individuals seeking care and support. The care of souls is
sacred; as such, it is a shared responsibility among pastors, lay leadership, and
those called to the ministry of care.
2. Pastoral Care and Counseling. Come to me, all who labor and are heavy laden,
and I will give you rest. Take my yoke upon you, and learn from me; for I am
gentle and lowly in heart, and you will find rest for your souls. For my yoke is
easy, and my burden is light. Matthew 11:28-30 RSV. The significance of
pastoral care and counseling has been recognized by the church from its
inception. Bearing another’s burdens, and as such fulfilling the law of Christ
(Galatians 6:2), is a responsibility entrusted to every member of the community of
faith but is specifically charged to the pastor as the “shepherd of the flock.“
The African American pastor’s role as caregiver and counselor, alongside those in
the church who are called and certified with appropriate intervention skills, has
been a part of the African American church tradition before clinical and pastoral
counseling as a specialty became normative. Historically, in the black church
experience, the pastor was the one who was trusted; he or she was considered
insightful, compassionate, and concerned about issues of social justice affecting
his or her parishioners. The same view is held today.
The pastor, as caregiver and counselor, strengthens the weak, heals the sick, binds
up the injured, and brings back those who stray (Ezekiel 34). The pastor attends to
the overall well-being of his or her parishioners, whatever their physical, spiritual,
or emotional state may be, and encourages them on their journey with God. This
is the foundation of pastoral care.
In the black church tradition, the pastor is one who walks with the Master, and
whose own life is held together by grace and mercy. It is in this context, that
pastoral care and counseling is extended to those who suffer and to those who
provide care for the suffering.
The pastor, through his or her life experience and training, is therefore able to
affirm life during sickness, pain, loss, bereavement, and in moments of transition
during the process of dying. He or she addresses the end of life with the assurance
that God has provided for us a better place after death. Throughout the grief
process and bereavement, support networks are in place, ministers and home
missionaries (those who care for the needs of people within the church and
community-at-large) stand ready to walk through the drama and chaos long-term
illness can present. Additionally, they are equipped to assist in identifying
community resources should the need arise.
3. Ministerial Support and Advocacy. [E]ncourage the fainthearted, help the
weak, be patient with them all. I Thessalonians 5:14 RSV. Ministry is always
comprised of both the laity (the people) and those called and ordained to a
designated leadership role, who are symbolically representative of the whole. In
most African American churches, there are ministers and laity who support the
work of the pastor by walking with and standing by those who are wrestling with
feelings of hopelessness and despair in the midst of their pain and life-altering
crises. Specifically, there are those persons in the African American church whose
role is to serve as advocates for the voiceless and act as a liaison between
institutions of care to assist families who are unable to navigate through the
bureaucratic chaos often associated with long-term care needs and terminal
illness.
Ministers of care are often assigned to hospitals, prisons, nursing homes, and
hospice care facilities to keep watch over individuals and to visit with family
members and friends. Support to the sick and dying, family and friends, and to
those providing care includes the provision of prayer, meditation materials, and
daily calls of concern. Advocacy, in the black church, is the promise of God’s
presence. Pastor and laity alike represents the Divine Incarnate walking alongside
those who are sick, suffering, and standing in need of holy intentions. Ministers of
care enable individuals to face their situations with dignity and even in the midst
of stigma and shame affirming always that “nothing shall separate us from the
love of God“ (Romans 8:39).
4. Prayer. Give ear to my words, O Lord, give heed to my groaning. Hearken to the
sound of my cry, my King and my God, for to thee I pray. Psalms 5:1-2 (RSV).
Prayer, therefore, is lifted up to the “hearer of the prayer” and has power to act on
behalf of the petitioner. It has been documented time and time again for nonbelievers that prayer can provide relief from pain and suffering. A significant role
of the African American church in palliative care continues to be the mobilization
of prayer partners and intercessory prayer groups to intercede on behalf of those
who are living with pain, anguish, and, sometimes, daily uncertainty.
Gathering families together for prayer is another way to show support for families
coping with a loved one’s illness and their own bereavement. Prayer works.
Prayer involves devotion, trust, respect, and a sense of dependence on the One to
whom prayer is directed. The African American church tradition is steeped in the
power of prayer and God’s word as recorded in the various transliterations of the
Bible. The entire scriptural record affirms that God is the One to whom prayer
should be directed. Prayer is the power that brings the breakthrough in sickness
and in death. “ Therefore I tell you, whatever you ask in prayer, believe that you
have received it, and it will be yours.” Mark 11:24 (RSV).
And so the role of the African American church in palliative care takes on many
dimensions, among which are pastoral preparation and leadership, the pastor
having skills and knowledge to affirm life and all of its many challenges from
birth to death; pastoral care and counseling , strengthening the weak, offering
care to the sick and giving hope to the dying; ministerial support and advocacy,
walking with and standing by persons who are voiceless and whose faith may be
wavering; and prayer, the power to change and sustain.
These are the crucial elements that guide the role of the African American church
in palliative care through “the valley of the shadow of death.” Through many
dangers toils and snares, the African American church must continue to beam a
light on the path of one’s journey through life, from the cradle to the grave. We
are eternally reminded that we must not fear, because the One to whom we pray is
always with us.
CONCLUSION
Consistent follow up, appropriate symptom management, pain assessment, and provider
commitment are needed for complete care of patients with HIV. Palliative care in general
and HIV care share a similar philosophy. Both types of care embrace a holistic approach,
providing nursing care, psychosocial care, medical care, symptom management, case
management, and dietary and medication management.
Culturally competent, holistic, comprehensive, spiritual, and compassionate care for
HIV-positive clients must be prioritized. As we move forward in this fight against AIDS,
we must be mindful that it is the silence, denial, and stigma of AIDS that continues to
cripple a community’s response to AIDS education, HIV testing, and treatment. The
involvement of the medical community and churches in this battle against AIDS is
imperative if we are to conquer this epidemic here and throughout the global community.
It is vital that leaders of the community organize to educate and empower the residents
with the essential information and tools to enable them to advocate for good quality,
equitable care. The Black church must respond to the needs of the community by
providing unbiased spiritual care when it is most needed for its parishioners.
It is not enough to express our sympathy by words; we should be ready to crystallize it
into actions.
— Frances E. W. Harper
African American writer and poet
REFERENCES
1. Centers for Disease Control (CDC) and Prevention: HIV/AIDS Surveillance
report US HIV and AIDS cases reported through December 2001. September 25,
2002;13(2):1-44. Year-end issue.
2. Centers for Disease Control (CDC) and Prevention: HIV/AIDS Surveillance
report US HIV and AIDS cases reported through December 2000. May 6, 2002;
L285 slide series, slide 13.
3. Weber R, Friis-Moller N, Sabin CA, et al. HIV and non-HIV-related deaths and
their relationship to immunodeficiency: the D:A:D study. Program and abstracts
of the 12th conference on Retroviruses and Opportunistic Infections. February 2225, 2005. Boston, Mass. Abstract 595.
4. Centers for Disease Control and Prevention: HIV/AIDS /Surveillance Report,
2004. Vol. 16. Atlanta: US Department of Health and Human Services, CDC:
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5. Singer JE, Fahy-Chandon B, Chi S, Syndulko K, Tourtellotte WW. Painful
symptoms reported by ambulatory HIV-infected menin alongitudinal study. Pain.
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6. LaRue FFA, Coleau SM. Underestimation and undertreatment of pain in HIV
disease: Multicentre strudy. BMJ. 1997;314:23-28.
7. Breitbart W, Rosenfeld B, Passik SD, McDonald MV, Thaler H, Portenoy RK.
The undertreatment of pain in ambulatory AIDS patients. Pain . 1996; 65:243249.
8. Kinzbrunner B, Weinreb N, Policzer J. 20 Common Problems. End-of-Life Care.
2002:397.
9. Selwyn P, Rivard M. Pallative Care for AIDS: Challenges and Opportunities in
the ERA of Highly Active Anti-Retroviral Therapy. J Palliat Med 2003;6:475499.
10. Phair JP, Munoz A, Detels R, et al. The risk of Pneumocystis carinii pneumonia
among men with human immunodeficiency virus type 1. N Engl J Med.
11. Benson C, et al. Treating OIs in Adult and Adolescents. CID . 2005;40 (Suppl 3)
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12. Luft BJ, Brooks RG, Conley FK, McCabe RE, Remington JS. Toxoplasmic
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13. Scripture quotations marked RSV are taken from the New Oxford Annotated Bible
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ABSTRACT: Spiritual Care Near Life’s End including Grief and Loss in the
Gwendolyn London, DMin
London & Associates
Silver Spring, MD
And
Robert Washington, PhD, MDiv
Montgomery Hospice
Rockville, MD
The recognition that spiritual exploration is an integral part of the dying process is based
on an understanding of the universal nature of spirituality and the ways that spirituality
affects everyday life. Faith often plays an important role in the coping responses of
persons faced with life crises such as a serious or life-threatening illness. Spirituality
encompasses one’s central values in life, especially those values that give life its
meaning. Research suggests that for most persons, spiritual issues become paramount at
the end of life. Focusing on spiritual rather than religious concerns, the emphasis of
spiritual care at the end of life is on addressing the spiritual needs of the dying patient and
family.
Spiritual Care Near Life”s End including Grief and Loss in the African American
Community
“Dying is a spiritual process with medical implications.”
Original quote:
The recognition that spiritual exploration is an integral part of the dying process is based
on an understanding of the universal nature of spirituality and the ways that spirituality
affects everyday life. The word spirituality is derived from the Hebrew word “ruach,”
which is usually translated as “spirit” but can also mean breath and wind. “Ruach” was
understood by the Jewish Kaballah to refer to the emotional self, which was believed to
be one of the three parts of the human soul.
For purposes of this discussion, spirituality is defined as “the inner desire to connect
with a higher reality and to experience through that connection a sense of
completion and wholeness.” At the heart of spirituality is the human desire to find
meaning in life and the universal search for that meaning. This search is grounded in the
awareness that, as humans, we are part of some reality that is greater than ourselves.
Spirituality is elusive and can be difficult to understand but reflects the awareness that the
“spirit” of each person is inherently related to some larger reality, which is often
described as a higher power. Spirituality is the relationship of a person’s inner being to
that power, however it is conceived and expressed. Spirituality encompasses one’s central
values in life, especially those values that give life meaning.
It is these values that influence a person’s deepest sense of who one is and what life is
about. Spirituality is the inner search for meaning and an understanding of universal
questions of human existence such as “Who and I?,” “Why am I here?” and “What is my
purpose in life?” When a person’s spirituality is denied or not acknowledged, it can
be experienced as an insult to that person’s inner being.
Though often viewed as synonymous, spirituality is a much broader concept that may
encompass many of the habits, rituals, gestures and symbols of religion but does not
reside entirely in the domain of organized institutions of religions. Spirituality is an inner
search to find meaning and an understanding of the universal questions of human
existence. Religion is a set of structured guidelines and beliefs that are practiced within a
religious tradition or institution. Religion is structured around doctrines that propose
answers to the universal questions of spirituality. All religions are a form of spiritual
expression but no one religion encompasses the totality of spirituality.
In recent years, spirituality in religion has come to represent the believer’s faith as being
more personal, less dogmatic, more open to new ideas and influences, and more
pluralistic than the beliefs expressed by established religions. It is also thought to express
the personal nature of a believer’s relationship with God as opposed to the general nature
of the relationship that is understood in many religions.
Conversely, some persons speak of spirituality as opposed to religion and generally
believe that there are many “spiritual paths” and that there is no objective proof about
which is the best path to follow. These persons emphasize the importance of finding
one’s own path rather than following the path set out by other persons or religious
doctrines.
There is an ongoing debate among some religious groups about the idea that an approach
based on “spirituality” rather than the observance of a specific religious doctrine is not a
true expression of our relationship to God. In fact, most African Americans practice some
form of organized religion and, within those structures, embrace a wide range of religious
beliefs. This diversity of beliefs, customs and practices is superimposed over their shared
history of slavery, discrimination and oppression, which has been a factor in the shaping
of the spiritual and religious understandings of the African American community.
Research suggests that for most persons, spiritual issues become paramount at the end of
life. Faith often plays an important role in the coping responses of persons faced with life
crises such as a serious or life-threatening illness. Even persons who have not previously
ascribed to a specific religious tradition often begin a spiritual search when suppressed or
ignored spiritual concerns begin to emerge. Spirituality encompasses one’s central values
in life, especially those values that give life meaning.
SPIRITUAL ISSUES AND SPIRITUAL NEEDS
The spiritual tasks of dying revolve around identifying, developing or reaffirming sources
of spiritual energy that can encourage faith and hope. Spiritual issues are unresolved
questions or concerns that deal with one’s ultimate purpose in life, one’s relationship to
God and one’s relationship to other people. Spiritual issues can be expressed in a number
of ways and are often difficult to identify or decipher .
Patients who are approaching the end of life often articulate their spiritual issues in the
form of questions or statements that may have various interpretations. Some examples of
spiritual issues that may be raised by patients include the following:
Who am I?
What do I really believe?
What are the things that I value in life?
Is this all there is to life? Is there any more?
What are the things that give my life meaning?
What have I contributed by this life that I have lived?
What are the things that I have left behind that are good?
What are the mistakes that I have made?
What are the things that I have left undone?
What is the state of my relationships?
What are the things that I have left unsaid?
Because spirituality is personal and unique, it can manifest in a variety of expressions,
including prayer, meditation and other spiritual practices that are utilized to address
spiritual needs. It is important that persons who are providing spiritual care at the end of
life be able to identify spiritual needs that need to be addressed. Spiritual needs generally
fall within the following areas:
Need for Belonging and Need for Relationship:
•
•
•
•
To be cared for, not abandoned or isolated
To give and receive love
For comfort and peace
Relationship needs: family, significant others, higher power
Need to Explore Meaning in Life, Suffering and Death:
•
•
•
•
•
•
•
•
•
•
•
•
•
To experience affirmation or self-worth
For acceptance of self, of others, of human events
To recognize sources of strength to face death
To contemplate what gives a sense of purpose and fulfillment
To discover personal meaning of pain and death
To refine hopes and goals
To move on to detachment and solitude
To die appropriately
To find hope that extends beyond the grave
To acknowledge unfinished/unresolved conflicts
To recognize nagging resentment and bitterness
To recognize feelings of guilt and blame
To be able to forgive and accept forgiveness
Just as some patients may experience or report serious physical pain, some patients will
experience spiritual pain. Spiritual pain is pain in their inner being and can be a greater
deterrent to comfort than physical pain.
Spiritual pain is a distinct factor in total suffering. It is important to remember that
spirituality involves the moral consciousness and includes thinking, motivation and
feeling. If an individual is dissatisfied with his or her inner being, there will be spiritual
distress. Inner anguish is often expressed by physical symptoms because it may be easier
than articulating difficult spiritual concepts.
Patients search for answers to the meaning of their illness, why they have to suffer and
what is going to happen next. Even when medical interventions may be deemed futile,
much can still be done to provide spiritual care as the end of life approaches.
THE ROLE OF SPIRITUAL CARE
Focusing on spiritual rather than religious concerns, the emphasis of spiritual care at the
end of life is on addressing the spiritual needs of the dying patient and family. Religion
can be defined as an organized set of practices that surround a traditionally prescribed
belief in the existence of God or a divine ruling power. Religion can also be seen as a set
of tools used to express or practice one’s beliefs, so religious issues are usually related to
a specific faith tradition or community and are attached to an agreed- upon set of
doctrines.
Spirituality is one’s relationship with the divine and the way that relationship is lived out
with one’s fellow men and women. It is the God in each person; that part that can
commune with the divine. Spirituality is what is sought when persons reach for meaning
in their lives. If spirit is what gives life animation, then spirituality is about the life of
faith—what drives and motivates it and what people find helpful in developing and
sustaining it.
Spirituality is the outworking in real life of a person’s faith—what the person does with
what he or she believes. A life-threatening illness often causes patients to re-examine
their spiritual beliefs as they search for ways to understand the meaning of their lives in
light of their life-threatening illness. Even persons who do not have traditional religious
beliefs or who have not followed any particular religious tradition can be drawn to
spiritual exploration as a way to make sense of not only their illness but their entire lives.
An important concept that undergirds spiritual care at the end of life is the idea that each
patient has the right to chart his or her own spiritual course. At this stage in a patient’s
life, every belief is subject to reexamination as he or she tries to prepare for an experience
unlike any they have had before.
The primary role of the spiritual caregiver is as partner in and facilitator of that spiritual
exploration. The goal is to help the patient examine and explore his or her own spiritual
concerns, issues, beliefs, values and spiritual resources to assist in life’s closure, whatever
the religion or lack of religion may be.
CHARACTERISTICS OF SPIRITUAL CARE PROVIDERS
Each end-of-life care patient has the right to chart his or her own spiritual course, so
anyone offering spiritual care to the dying must be sensitive to their right to do so. The
most important skill that spiritual care providers must possess is the ability to listen
without judgment.
Spiritual care providers for those at the end of life are often asked if they find the work
depressing. The answer is almost always “no.” Most will say that they feel called to this
work and are renewed and refreshed by this particular opportunity for service.
Patients and families greatly appreciate someone who is understanding and not
judgmental. All too often, patients have spiritual concerns but reject spiritual care for fear
that the care provider will be preachy and want them to assert specific beliefs. This work
requires an attitude that is directly opposite. Some refer to the work of the spiritual
caregiver as a ministry of presence. The spiritual care provider is consistently present for
the patient and loved ones regardless of their beliefs and issues. In so doing the care
provider connects on the level of the s pirit and conveys the loving, accepting and
inviting attitude of God.
Most African Americans, in fact, most people, travel the journey from initial diagnosis to
death with the support of a community of like-minded believers. Within these
communities they pray and are prayed for, study sacred texts, share faith stories that are
both communal and personal, and sing songs of inspiration.
Many of these activities are provided by members of the faith community for the dying
patient when that person is no longer able to communicate nor is conscious. Faith
communities, whether or not they are represented by clergy, are often a primary source of
support for African American terminally ill patients.
This discussion does not focus on the ordinary needs of dying patients but explores those
who experience spiritual distress at life’s end and require more than the usual attention
from a spiritual care provider.
They can be grouped into three categories: those who struggle with end-of-life decision
making; those who are concerned about afterlife; and, those who incessantly search for
meaning and/or a way to understand suffering. Certainly, these concerns can be issues for
patients and/or their loved ones, which can include the biological family as well as
friends.
END-OF-LIFE DECISION MAKING
At key junctures along the journey toward death, patients and their families face choice
points:
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Upon diagnosis, they may have to decide whether to undergo curative treatments
that might have distressing side effects. This decision too often calls into question
the patient’s will to live, either in his/her own mind or in the minds of those who
love the patient.
Most families desire to keep their loved one in the home. and most patients desire
to die at home. Nevertheless, caregiving can become a challenge that requires
outside support. At this time, the family might be forced to consider nursing home
placement and/or hiring private caregivers to assist with home care. These
•
•
•
decisions often have financial implications and can raise concerns about depleting
the family’s resources.
When the patient’s physician determines that curative treatments are no longer
effective, the patient must decide whether or not to continue trying despite
medical opinion. Sometimes, the patient and family might be offered the
opportunity to engage in experimental trials of exploratory medications.
Most people fear pain more than they fear death. Fortunately, in today’s world,
rarely is there a need for anyone to endure discomforting pain, yet the issue of
what kind of pain medication and how much loom large for a lot of patients and
families. Fears of addiction and the wish to remain alert and communicative
compete with the desire for comfort.
Two vexing issues for a number of patients and families involve feeding and
resuscitation. The inability to eat is especially troubling to a number of patients
and families for whom feeding is a sign of loving. Even when medical burdens
outweigh benefits, the patient and family might have trouble foregoing artificial
feeding approaches and agreeing to a Do Not Resuscitate Order that can be
viewed as choosing to die.
These are difficult issues, especially for families that have not engaged in Advance Care
Planning. The difficulty can be exacerbated if the patient and/or loved one believes that
there is a response desired by God. Too often, deeply held religious views are invoked to
compel a particular decision by someone who is well-meaning. The spiritual care
provider can play a pivotal role by diffusing the tension that exists within the patient or
between the patient and loved ones or among loved ones.
In a training video on end-of-life care, Reverend James Forbes of Riverside Church in
New York told two sisters that “God does not have the answer,” as they argued about
taking their father off a ventilator following a stroke that left him in a persistent
vegetative state. How true!
People should be encouraged to pray and talk to God about the decisions they are facing,
but it is misleading and potentially destructive to allow anyone to be oppressed by the
belief that there is only one good decision and that God wants them to choose it.
People need to understand that it is their decision and that God will continue to support
and love them regardless of what they choose. We have been given minds to use—to
think and weigh options prior to deciding. We do so by gathering all the available
information and perspectives, i.e., by being well-informed. (If the patient is not capable
or is unwilling to digest data, then a chosen loved one can do it for him/her.) Intelligent
decision making reflects our human nature—products of God’s self.
God also wants the patients and loved ones to engage in harmonizing processes. In other
words, God wants the participants to engage in a process of decision making resulting in
closer relationships with one another and with God. How does that happen? It occurs
when the participants enter a process of discernment and engagement that has integrity
and involves listening and hearing intently. Each person should know that his/her point of
view has not only been heard but is valued. We know that we have been heard when the
other participants are able to accurately reflect our point of view—both in content and in
meaning.
God’s investment is in thoughtful, loving processes, not particular outcomes. To be
sure, it is not always possible to engage in such processes. Sometimes people refuse to
value the opinions of others. When that occurs, the spiritual care provider must support
the patient in her/his discernment process and help the patient articulate his/her
perspective to those who might disagree.
The spiritual care provider does so even when he or she disagrees with the patient’s
decision. The spiritual care provider can assure others that the patient’s decision making
was thoughtful and prayerful, if it has been. Clerical support for an unpopular decision
can prove invaluable.
Sometimes patients and/or loved ones pray for a cure despite medical predictions to the
contrary. Aware of their fervent prayer request, the spiritual caregiver should pray for a
cure with and for the patient and/or family member. Doing so will not induce false hope.
The patient and/or family have been told that the patient is dying. They need the spiritual
caregiver to hear and respond to the hope they have in God’s ability to perform a miracle.
They will appreciate someone who understands them and be thankful even if the patient
dies. God, not the spiritual caregiver, will be held responsible for the death and, more
than likely, the prayerful person will now say that the death was God’s will.
CONCERNS ABOUT THE AFTERLIFE
Spiritual caregivers who work with people who are nearing life’s end are fortunate to
encounter many different belief systems including some who profess no belief. At some
point, the spiritual caregiver will learn what the patient and loved ones believe happens at
the end of life. Afterlife beliefs can be a source of comfort to patients and/or love ones.
Even those who do not believe that there is an afterlife can be comforted by the
recognition that pain and other forms of suffering will end. Some applaud science and
aver that the life cycle makes room for others.
Those who believe in reincarnation often look forward to the chance to live an improved
life the next time around. Others assert that their concept of afterlife is vague—they
believe that the energy that is life does not dissipate but are unsure what form afterlife
will take.
Most African Americans are either Christian or Muslim and believe in heaven; many also
believe in hell. Conflicts about qualifying for heaven can occur within the patient or a
loved one or between the patient and a loved one or between loved ones. Some people are
unsure about getting to heaven on philosophical grounds.
They assert that they cannot know the will of God because no one can, and they are
comfortable being ignorant. Others have doubts or feel that they are not heaven bound.
They believe that their past behavior(s) are preventing them from entering heaven.
Sometimes it is not the patient but a loved one that has the concern.
The spiritual caregiver must put him/herself in that loved ones shoes and think about how
bad it feels to believe that the person you love is going to hell, especially if your concept
of hell is everlasting excruciating pain. Although the spiritual caregiver’s ultimate
concern must be the patient, there is an enormous responsibility to minister to the entire
network of loved ones. That task becomes complicated when there is disagreement.
Whether it is the patient or a member of the love relationship, concerns about afterlife
imply one of the following beliefs: that the Divine is punitive, that the patient does not
deserve forgiveness or has not asked for it or that the patient is unworthy.
The antidote for acute afterlife concern is acceptance of God’s forgiveness and love. Too
often, patients with this level of suffering have a punitive concept of God. Helping them
to feel forgiven even when there is no apparent wrongdoing is the role of the spiritual
caregiver.
Whether or not the spiritual caregiver believes that the patient has erred is unimportant if
the patient or loved one believes it. The spiritual caregiver offers the patient an
opportunity to be forgiven and emphasizes God’s desire to reward (have a close
relationship with) all of God’s people.
Those who seek/need forgiveness can point to a historical act or acts that give rise to the
need for forgiveness. If they can believe that their error is the most grievous ever enacted,
it can be helpful for the spiritual caregiver to provide assurance that s/he is aware of a
range of injurious actions for which others have sought and felt forgiveness.
It can also help to emphasize that God forgives those who sincerely ask for it, and that
God looks at the current state of one’s heart, not past injustices. Finally, it can help to
insist upon the loving nature of God that continues to call us into a closer relationship
with God. The loving forgiveness of God is manifested in the consistent and
understanding presence of the spiritual caregiver who is not daunted by knowledge of the
person’s past.
There are times when forgiveness is sought from another person who cannot or will not
give it. The person seeking forgiveness is helped to understand that God’s forgiveness
trumps all.
The most challenging people to work with in relation to afterlife issues are those who feel
inherently unworthy. Instead of pointing to an act or acts for which they feel responsible,
those who feel unworthy point to themselves as undeserving of forgiveness and/or God’s
love.
Those who feel this way more than likely have histories of serious childhood abuse
and/or neglect. Early in life, others responded to them in ways that made them feel
unlovable. They usually require a professional in mental health to help them overcome
their beliefs. The spiritual caregiver consistently continues to manifest God’s love and
forgiveness and finds consolation in knowing that one day the person will know his/her
inherent worth in God’s eyes.
THE SEARCH FOR MEANING
Some patients and loved ones strive to make sense of their experience or to find meaning
in it. They are suffering and ask the questions “Why me?” or “Why my loved one.” Pain
and suffering are personally determined and cannot be compared to another’s. What one
experiences as painful, another might not.
It is never appropriate to trivialize the person’s suffering by suggesting that s/he should
not feel that way. It is the person’s experience and should be honored as real for that
person. Sometimes the person’s suffering is complicated by well-meaning religious
people who aver that “if you know God or know where you are going (heaven), you
should not be suffering as you do.”
Try as one might, oftentimes, people never come to terms with the circumstances they
have faced. For example, it is especially difficult for mothers to make sense of, or find
meaning in, the suffering and death of a child.
In fact, it doesn’t make sense. Yes, there are those who console themselves by saying that
tragedy and the suffering consequent to it are God’s will, but there are others who rail
against that same God for causing such agonizing pain. Still others are confused and
question their faith. Each of these reactions is normal and to be expected.
Some dying patients who have lost mobility will ask God to take their lives.
They feel useless, have no unfinished business and are ready to die. They cannot
understand why the God for whom they have been faithful now allows them to suffer
unbearably. The spiritual care provider is unable to respond in a satisfactory way because
immediate death is the only resolution desired. The role of the spiritual caregiver is to
bear witness to the suffering and in so doing “burden share” with the sufferer. The
spiritual caregiver consoles him/herself with the knowledge that the sufferer will have a
different perspective in death.
There is research evidence that the longer a person searches for meaning in the tragedies
of his or her life, the more likely he or she is to experience mental health difficulties. In
other words, this relentless irresolvable search eventually gives rise to illness.
Although it is impossible for some people to find meaning or make sense of their
circumstances, there can be long-term benefit in surviving tragedy and suffering.
Surviving the unthinkable often demonstrates that the person has greater capacity than
anticipated—more emotional strength and/or greater resilience and/or stronger
relationships and/or more faith. God may be credited with giving the survivor the ability
to pull through. The survivor is heard to say “I never thought I could get over that.”
Sometimes the survivor develops a new understanding of his or her faith and relationship
with God. This new faith can accommodate tragedy that had never been contemplated
before the suffering. His or her understanding of the nature of God has broadened.
GRIEF AND LOSS
Understanding grief and loss is important for persons who are providing spiritual care to
dying patients and their families. The terms “grief” and “loss” are often used
interchangeably but have different meanings and implications. The dictionary definition
of grief is “a poignant distress caused by a loss.” The word “loss” is defined as “the act of
losing possession of someone or something” and as “a feeling of being deprived as a
result of a loss or separation from someone or something.”
Grief is the name we give to the various feelings and thoughts we experience when we
face, or think that we might face, a loss. In fact, grieving is the process by which we heal
following a loss. Grief is a natural reaction to the experience of many kinds of loss, not
necessarily a loss through death. The pain, suffering and search for meaning one
experiences all help the griever to come to grips with loss and go on with life. To be sure
there are some who remain stuck—unable to get beyond a certain point in the grieving
process. We refer to their grief as complicated.
Although some people experience grief exclusively as a cognitive process, most talk
about the feelings associated with grief—anger, sadness, relief, joy, bitterness. It is fair to
say that losing makes us feel. Human beings are marvelously made and,as such, are
capable of experiencing more than one emotion at the same time.
The griever may be sad because the loved one will not be seen again, relieved that his/her
suffering has come to an end and envious that the griever will see predeceased loved ones
in heaven. The complexity of feelings can be great, and the griever may not be able to
tease out a particular emotion.
Grief is not confined to the person who is losing or has lost a loved one. Grieving begins
for the patient and family at the moment of diagnosis of a life-limiting illness. Sometimes
patients and/or loved ones act as though they never heard the diagnosis. Some wellintentioned or misguided individuals will say that that is an indication of denial. Denial is
a pejorative term that does not respect the time needed to adjust to this new and
devastating news. When diagnosed with lung cancer, the man who has smoked four
packs a day wants nothing more than a cigarette. He is not in denial; instead, he is
resorting to familiar and dependable anxiety-reducing behavior. After all, it takes time
and experience to adjust to news that one’s life is likely to end much sooner than
expected. There are so many things that this person can be thinking of—death, family
reactions, financial implications, whom to tell and why, possibilities of pain. The mind
has difficulty dealing with all of these issues at once, so this first grief reaction affords
time to decide where to focus and when—that is not denial.
During the process of grieving, the person learns to accept that the loss is real and
permanent—the dead loved one is not coming back; the body will not be whole again.
While accepting that the loss is real, the griever is also beginning to adjust to living
without that which has been lost.
The experiences that come with time force the griever into a new way of being. The
widow learns to write checks, and the ill person learns to accept assistance with tasks of
daily living. There are feelings associated with each mini-loss and each requires an
adjustment. Each loss, is, therefore, grieved.
Although the time varies from person to person, the griever eventually begins to reinvest
energy into creating a future. The widower might consider dating and seek
companionship; the person who is terminally ill begins to set goals for him/herself. At
each stage in the illness process, abilities wane, and new goals are set that are realistic for
the time being and give meaning and purpose to life. The serious pain of loss gives way
to an ever-present reminder that something has been lost.
CONCLUSION
Grieving, like spirituality, is personally determined. It is, therefore, very inappropriate to
suggest that grief should be resolved within a specific time frame. In fact, resolution is an
inappropriate term for people learning to live with loss, and, for some, the pain of it never
completely goes away. The griever (including those who are dying) requires someone
who is willing to be a witness to, and bear, some of the pain.
The loving acceptance of the spiritual care provider provides the secure backdrop against
which the person works through issues to a more peaceful acceptance. At least, that is the
goal. That does not always happen, and some people die grieving, kicking and screaming.
Nevertheless, the consistent presence of the spiritual caregiver continues to convey the
message that Spirit is present remains present and supportive and continues to invite a
closer relationship with the person in pain. Supporting people who are at this stage in life
is an honor and a privilege and should be valued as such. The spiritual caregiver will find
that he or she reaps the greater reward.
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Buckman, Robert. “I Don’t Know what To Say”. New York : Random House, 1992.
Byock, Ira. Peace and Possibilities at the End of Life. New York : Riverhead Books,
1997.
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Baywood Publishing, 1993
Freeman, Stephen. Grief and Loss. Thomson/Brooks/Cole. 2005.
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Hutchinson, Joyce and Rupp, Joyce. May I Walk You Home? Notre Dame, IN: Ave
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ABSTRACT: End-of-Life Care Ministry in the African American Church
Kelvin Calloway, DMin
Second A.M.E. Church
Los Angeles, CA
And
London & Associates
Silver Spring, MD
The character and identity of the African American church has been forged out of a
particular historical, cultural, and theological context. As a result of the long, difficult and
often violent history of slavery, racism and continuing oppression that African Americans
have suffered in this country, the church has traditionally been and continues to serve as
the center of African American community life. Because of the danger and the threat of
physical violence that has always been a part of African American life in this country,
one of the most important of those transition points was at the time of death or when a
member of the community was dying. It is indeed true that the church needs to be
involved in the ongoing dialogue and in the changes that are occurring in the medical
system as a result of the principles of palliative care. But, it is also true that for the
African American church and its members, those principles need to be redefined in a way
that takes into consideration the uniqueness of their history and the psychological,
emotional, spiritual and practical consequences of the oppression that makes up that
history.
End-of-Life Care Ministry in the African American Church
“God of our weary years, God of our silent tears,
Thou who has brought us this far on our way,
Thou who has by thy might led us into the light,
Keep us forever in the path we pray.”
Lift Every Voice and Sing - Negro National Anthem
James Weldon Johnson
The character and identity of the African American church has been forged out of a
particular historical, cultural and theological context. As a result of the long, difficult and
often violent history of slavery, racism and continuing oppression that African Americans
have suffered in this country, the church has traditionally been and continues to serve as
the center of African American community life. In addition, the church has been viewed
as the institution that African Americans have turned to most often for comfort and
support during the periods of crisis that have occurred at various points of transition in
life. From birth to death, the church has been the place where African Americans have
come to share their joys and their sorrows when the larger society refused to grant them
dignity or respect. Because of the danger and the threat of physical violence that has
always been a part of African American life in this country, one of the most important of
those transition points was at the time of death or when a member of the community was
dying.
Historical and Cultural Context
The history of African Americans in America is a history filled with violence and death.
This history is referred to by Dr. Karla Holloway in her book, “Passed On: African
American Mourning Stories” as “black death and dying.” Dr. Holloway defines “black
death and dying” as a century-long experience that is characterized by a particular
vulnerability to untimely death.
Holloway sees black death and dying as death that results from white rage and violence
and what she cogently refers to as “color-coded death, which is death that occurs for no
other reason than the victim’s skin color. She defines this color-coded death as death
resulting from the residue of riots, executions and suicides, all the result of African
Americans being viewed as having less value than whites.
In addition to the kinds of violent death that are included in Dr. Holloway’s description of
black death and dying, African Americans have also suffered untimely death and dying as
a result of hazardous and unhealthy work conditions through the exposure to asbestos and
other carcinogens in the coal mines and shipyards of the south and manufacturing plants
of the north.
Apart from the violent and untimely deaths described above, African Americans have
suffered unnecessary death at the hands of the medical establishment resulting from
unethical experiments such as the well-documented syphilis experiments at Tuskegee
University and similar studies at John Hopkins, Chicago Medical College and the
Medical College of Virginia.
The most well-know example of this practice was documented in the Tuskegee Syphilis
Study. This study, also known as the Public Health Service Syphilis Study, was a clinical
trial that ran from 1932 through 1972. The trial, conducted around Tuskegee, Alabama,
included 400 poor, mostly illiterate African American sharecroppers who became part of
a study on the treatment and natural history of syphilis. Individuals enrolled in the study
did not give informed consent, were not told of their diagnosis and were denied treatment
that could have resulted in a cure, so that researcher could observe the natural progression
of a disease that resulted in death.
In addition, a historical progression of poor health care and a lack of access to quality
health care services have created a deep-seated distrust in the health care system. For
African Americans, the system, designed to provide care and an opportunity for healing,
has often resulted in untimely and unnecessary death. Because of this distrust, African
Americans are generally less compliant in following medical regimes during illnesses.
This has resulted in increased mortality among African Americans for cancer and other
serious illnesses that could have been treated more successfully with earlier detection.
The result of this difficult and painful history has been the development of a collective
cultural psyche toward death and dying. The implications of such a collective cultural
psyche developed as a result of violence and oppression are important and far-reaching
because this approach can be very useful in understanding how African Americans view
death and dying.
Because of the violence and oppression they have endured and the ways that oppression
has affected and influenced their experiences with death and dying in America, African
Americans have generally not denied death. Rather than fear death, African Americans
have often viewed dying as an opportunity to be liberated from a racist reality and as a
way to freedom from the troubles of a mean old world.
According to Dr. Holloway, death and dying have historically been viewed as an everpresent part of the African American reality. Far from being unusual occurrences, to
African Americans, death and dying have been seen as persistent events in the cycles of
daily life. To her, they constitute an untimely accompaniment to the life of black folk.
From the hush harbors of the “Invisible Institution” of the Antebellum South, to the
organized independent “Black Churches,” the African American church has been the
institution that has ministered to the needs of black people in this country. E. Franklin
Frazier wrote in his book, The Negro Church in America, that it was the black church that
provided the social cohesion for black people in America. Even prior to the organization
of the black church as a formal institution, slaves who had been introduced to
“Christianity” by their masters exercised the social function of the church when they
gathered in secret to practice the spiritual rituals and sing the newly learned songs that
sustained them in their difficult everyday life.
These gatherings provided the slaves with an important orientation to their new world.
From that initial orientation, the slaves went on to develop a unique religious expression
that was forged from the African religions of the motherland mixed with the Christian
religion of their new-world experience. The merger of the two created an African
American religious experience that spoke to their existential plight as Africans in
America.
In his works, Deep River and The Negro Spiritual Speaks of Life and Death, Howard
Thurman provides some insights on how the slaves sought to address the challenges of
theologizing about their experiences with death and dying in America. According to
Thurman, death was not the worst of all possible things that could happen to an
individual, as there were some things in life that were worse than death. To Thurman, the
necessity of living in a climate that stripped the human spirit of its essential dignity was
worse than dying.
Death was theologized by the slaves as release and was regarded as complete surcease
from anxiety and care. For them, it was not a renunciation of life because its terms had
been refused, but an exulting sigh of sheer release from a very wearying burden:
I know moon-rise, I know star-rise,
I lay this body down.
I walk in the moon-light; I walk in the star-light
To lay this body down.
I walk in the graveyard, I walk through the graveyard
I lie in the grave and stretch out my arms,
According to Thurman, another attitude of the slaves toward death and dying was one of
resignation mixed with elements of fear and a manifestation of muted dread despite the
fact that there seemed to have been a careful note of familiarity with the experience of
death. In contrasting contemporary attitudes toward death and dying with that of the
slaves, Thurman says:
“We know that death is a commonplace in the experience of life and yet we keep it
behind a curtain or locked in a closet, as it were. To us, death is gruesome and
aesthetically distasteful as a primary contact for ourselves and our children.
For most of us, when members of our immediate families die, the death itself takes place
in a hospital. From the hospital, the deceased is carried to the mortuary. When we see the
beloved one again, the body has been washed, embalmed, and dressed for burial. Our
exposure to the facts involved, the silent intimacies in preparation for burial are almost
entirely secondary, to say the least. The hospital and the mortuary have entered
profoundly into [modern life] at this point. The result is that death [and dying] has been
largely alienated from the normal compass of daily experience....”
This was not the situation with the creators of the Spirituals. Their contact with dead [and
dying] was immediate, inescapable, and dramatic. The family or friends washed the body
of the dead; the grave clothes were carefully and personally selected or especially made.
The coffin itself was built by a familiar hand....During all these processes, the body
remained in the home...In the case of death from illness all of the final aspects of their
experience were shared by those who had taken their turn “keeping watch.”
Every detail was etched in the mind and emotions against the background of the
approaching end. The “death rattle” in the throat, the spasm of tense vibration in the body
as the struggle for air increased in intensity, the sheer physical panic sometimes
manifest—all these were a familiar part of the commonplace pattern of daily experience.
Out of a full knowledge of fact such a song as this was born:
I want to die easy when I die,
I want to die easy when I die,
Shout salvation as I fly,
I want to die easy when I die.
According to Thurman, the good death [as theologized] by the slaves was a quiet death
without the seizure of panic, the closing of the door to earthly life...to die easy when they
died. Death and dying was a personal and attached experience for the slaves. Family and
friends were with loved ones when they died.
The “slave songs” sung in the hush harbors and cotton fields of the Antebellum South
were more than mere songs, they were ritualistic responses of the slaves to their
experiences with black death and dying and serve as a foundation for end-of-life care
ministry in the African American church.
The African American church was first organized as an official institution in Philadelphia
in 1787. Unlike most religious groups that are born out of a theological or doctrinal issue
or concern, the African American church began in protest. Following the leadership of
Richard Allen, a former slave who is considered the founder of the African Methodist
Episcopal Church, a group of black parishioners walked out in the middle of a Sunday
worship service because they were not allowed to kneel for prayer in the section of the
church where they wished to sit. Allen, an influential member of the Philadelphia
community and an expert in extemporaneous sermons, was invited to preach at St.
Georges, the first Methodist Church in America.
Allen’s preaching was so successful that many new members, most of whom were black,
joined St. George’s on a weekly basis. Recognizing that black parishioners had special
spiritual needs and that the white members were becoming uneasy with the large number
of new black members, Alan approached the elder at St. George’s and asked permission
to establish a black church. The elder denied the request, and a year later when Allen
made another request, that one was denied as well.
On April 12, 1787, Allen and Absalom Jones formed the Free African Society. Though
not a religious organization, the Society served the black community much like a church.
The Society was funded by dues-paying members whose goal was to extend aid to
widows, the sick and the jobless. Allen believed that members, while lifting themselves,
could lift all black people. The Society also regulated marriages, taught the importance of
thrift, condemned the practice of adultery and worked to improve moral values in the
community.
The mounting racial tensions at St. George’s finally came to a head on the first Sunday
after completion of a newly constructed upper gallery. Unknown to the black
parishioners, they were to be relegated entirely to this area. When Allen and Absalom
Jones took seats outside of the gallery, they were accosted by a trustee as they knelt in
prayer. Allen and the other black parishioners were incensed by this insult and left the
church in a body, never to return again. Allen and his followers later organized Bethel
Church and, in 1816, established the African Methodist Episcopal Church as a separate
denomination with Richard Allen as its first bishop.
The Role of the Church
With this history as a backdrop, it is important to consider how today’s church has
been— and continues to be—shaped and influenced by that history. Building on Richard
Allen’s original vision of the church as a center of social, moral and economic support in
the midst of racial, social and religious oppression, the African American church has
continued to evolve. In the midst of the racism and violence that has characterized the
African American experience since the end of slavery, the church has been the most
visible and vocal institution working to ensure the rights and the value of African
American life. When African Americans were shut out of mainstream opportunities by
segregation, the church led the way to the development of a viable community.
Some of the many important contributions of the African American church to the
betterment of African American life fall within the areas of education, health,
socialization and economic development.
In the volatile Civil Rights era of the 1960s, the church and its leaders led the way in the
struggle for equality and equal rights. In the two hundred years since its official
beginning, the African American church has become the repository of African American
life, African American values, African American history and the African American’s
hope. It was this hope that allowed them to live in an oppressive society that in many
ways embodied an absence of hope and to find ways to transcend that absence.
One of the most important roles that the African American church has traditionally filled
is the care and service that it offers to its membership and to the larger community at the
time of death.
The church has been the institution that African Americans have turned to for comfort
and support during the periods of crisis that have occurred at various points of transition
in life. Because of the danger and the threat of physical violence that has always been a
part of African American life in this country, one of the most important of those
transition points was when a member of the community died. In the African American
community, the funeral service is an important ritual that calls the community together in
recognition and celebration of the life of the deceased and in support of the family and
friends. As the place where the funeral was held and as the organization that stepped to
the front to provide most of the services related to the event, the church was at the center
of this occasion for both its members and for persons who were not a part of the church
body.
Developing End-of-Life Ministries
While the African American church has always had a commitment to pastoral care for its
members, developing a ministry especially dedicated to serving dying persons and their
families could be one of the most significant services that a church can provide.
Visitation of the sick is one of the primary tasks of African American ministers, but few
churches have developed focused end-of-life care programs. A small number of larger,
more progressive churches have developed such programs, but they represent a small
percentage of the whole. To undertake this focus requires a great deal of commitment and
a major educational effort to obtain information about the current trends and issues
surrounding the increasing public dialogue about palliative medicine and end-of-life care.
A recent survey of all faith leaders in the Kansas City metropolitan area conducted by the
Center for Practical Bioethics revealed the following:
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Thirty-seven percent of faith leaders surveyed thought they minister “very
effectively” to those who are seriously ill or dying.
Less than 44 percent of faith leaders surveyed thought they were “very prepared”
to minister to those who were seriously ill or dying..
Only 8 percent 21 of the faith leaders surveyed thought that their congregations
were “very prepared” to minister to the seriously ill and dying.
More than half (57 percent) of the congregations surveyed had not participated in
any program to enhance their ability to minister to the seriously ill and dying.
Sixty-six percent of the congregations surveyed did not have any programs or
other means of teaching members of their congregation how to minister to the
seriously ill and dying.
About 50 percent of the faith leaders surveyed rated their familiarity with the
resources that are available to help them minister to the seriously ill and dying as
“poor” or “very poor.”
Recent studies have shown that people in America die in hospitals isolated from
meaningful human contact with their family and friends. In the past, dying was
considered a natural part of life, and most people died at home. Medical advances in the
late 20 th century created a new milieu so that now most people die in the hospital where
death is seen as a technological and medical failure. Dying persons can suffer needlessly
because the medical team has not been trained to offer compassionate care, and
communications can be poor between the patient and family and the medical team.
The focus of dying has shifted from the spiritual realm of reconciliation and the healing
power of God to the secular realm of medical technology. Secular views of dying, which
often promote a cure at all costs, can conflict with Christian views, which see death as a
natural part of the life cycle and which encompass a different form of healing—God’s
action to bring peace to the dying person. As a result, the process of dying in America has
become detached and impersonal. As more and more palliative medicine and end-of -life
care programs have developed, much has been written about how the church can play a
larger role in propagating palliative care and encouraging African Americans to embrace
these principles. Many believe that the church is the only institution in the African
American community that can address these issues.
What has not been given proper consideration is the fact that as the repository of African
American history, culture and values, any approach that the church might take must be
one that honors that history, culture and values.
It is indeed true that the church needs to be involved in the ongoing dialogue and in the
changes that are occurring in the medical system as a result of the principles of palliative
care. But, it is also true that for the African American church and its members, those
principles need to be redefined in a way that takes into consideration the uniqueness of
their history and the psychological, emotional, spiritual and practical consequences of the
oppression that makes up that history. Because the larger white society placed so little
value on the lives of African Americans, African Americans have not been eager to
accept the concepts of palliative care that have become so prevalent in white society and
have no faith in the medical establishment to decide who should live or die.
The basic principles of end-of-life care are supposedly based on the ancient Christian
tradition of caring, but for African Americans in this country, there is very little
relationship between those principles and the way that their lives were impacted. Because
of the understandable distrust that African Americans have for the medical establishment,
any effort to engage the church must be informed within a context of providing the
church and its people with knowledge so that they can make their own choices.
What End-of-Life Care Ministry Should Include
What we know about ministry in the African American church from a historical, cultural
and theological perspective as well as what we know about the ongoing dialogue in
contemporary society can help to shape a more effective approach to end-of-life ministry
in the African American church.
A number of factors should be considered:
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Use of Sermons - In order to set the tone for the church, the minister must be
willing to use sermons to help the congregation understand that death is a natural
part of life and that intentional care of the dying is an important part of the
church’s ministry.
Educational Programs - Any church-based end-of-life program should offer
intentional opportunities to increase the congregation’s awareness of “culturally
sensitive” resources that are available to assist the seriously ill and dying as well
as opportunities to improve the congregation’s ability to address issues related to
death and dying.
Skill Development - In addition to educational programs, congregations can
establish programs to help members develop the skills within the congregation
that will enable the church to effectively address the needs of the seriously ill and
dying.
Advocacy - Ministers and other church leaders can become knowledgeable
enough to join the dialogue in order to take their place as advocates for the
persons that they serve.
Establishment of Support Programs - The church is a natural and ideal place for
the establishment of support groups for patients, family members and other
persons who are impacted by a life-threatening illness.
Development of Rituals - End-of-life care ministry should work toward
developing culturally sensitive rituals that value in death what the seriously ill and
dying valued in life. As the slaves created the spirituals or “slave songs” that
ritualized death and dying, so must the African American church create similar
rituals to serve a similar purpose.
Explore the Use of Community Resources - Because the church represents a large
number of members, a congregation can collect information on the resources that
are available in the community and establish partnership relationships with them
on behalf of its members.
Conclusion
As a result of the long, difficult and often violent history of slavery, racism and
continuing oppression that African Americans have suffered in this country, the church
has traditionally been and continues to serve as the center of African American
community life. The church has been viewed as the institution that African Americans
have turned to most often for comfort and support during periods of crisis. Because of the
danger and the threat of physical violence that has always been a part of African
American life in this country, one of the most important of those transition points was at
the time of death or when a member of the community was dying.
The focus of dying has shifted from the spiritual realm of reconciliation and the healing
power of God to the secular realm of medical technology. Secular views of dying, which
often promote a cure at all costs, can conflict with Christian views, which see death as a
natural part of the life cycle and which encompass a different form of healing—God’s
action to bring peace to the dying person. As a result, the process of dying in America has
become detached and impersonal.
As more and more palliative medicine and end-of-life care programs have developed,
much has been written about how the church can play a larger role in propagating
palliative care and encouraging African Americans to embrace these principles. Many
believe that the church is the only institution in the African American community that can
address these issues.
It is indeed true that the church needs to be involved in the ongoing dialogue and in the
changes that are occurring in the medical system as a result of the principles of palliative
care.
But it is also true that for the African American church and its members, those principles
need to be redefined in a way that takes into consideration the uniqueness of their history
and the psychological, emotional, spiritual and practical consequences of the oppression
that makes up that history.
Bibliography
Frazier, E. Franklin. The Negro Church in America. New York : Schocken Books, 1966.
Gray, Fred D. The Tuskegee Syphilis Study: The Real Story and Beyond. Montgomery :
New South Books, 1998.
Holloway, Karla FC. Passed On: African American Mourning Stories. Durham : Duke
University Press, 2002.
Lincoln, C. Eric. The Black Church Since Frazier, New York : Schocken, 1974.
Lincoln, C. Eric. Race, Religion and the Continuing American Dilemma, New York : Hill
and Wang, 1984.
Lincoln, C. Eric and Mayima, LH. The African American Church in the African
American Experience. Durham : Duke University Press, 1991.
Meyer, Charles. Surviving Death: A Practical Guide to Caring for the Dying and
Bereaved. Mystic: Twenty-Third Publications, 1991.
Thurman, Howard. Deep River and the Negro Spiritual Speaks of Life and Death.
Richmond : Friends United Press, 1975.
Camilla Hudson
Patient Advocate
Chicago, IL
Sharon R. Latson
VITAS Healthcare Corporation
Chicago, IL
USC Center for Health Disparities
Silver Spring, MD
Advance Care Planning - An Overview
Sharon R. Latson
USC Center for Health Disparities
Advance care planning is generally used to refer to oral and written instructions about
one’s future medical care in the event that one becomes unable to communicate these
instructions. Advance care planning is a process involving oral conversations and written
instructions that outline a person’s health care preference for the future, in the event that
the patient becomes unable to make or communicate decisions for themselves.
Advance care planning is a process that involves the following steps:
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Speaking with loved ones about preferences for end-of-life treatment
Getting information about the patient’s illness, reflecting upon the available
choices about treatment and deciding what is most important
Deciding which person the patient would like to make health care decisions on
their behalf in the event they are unable to make them for themselves; it is
important that the patient talk to the chosen person to make sure that he or she
agrees to do this and he or she knows the patient’s preferences
Advance care planning involves three basic elements. First, it is important for the patient
to spend time thinking about their health care preferences and what they would want
should they not be able to speak for themselves. The more time spent prioritizing their
wishes, the easier time they’ll have communicating these wishes to their loved ones.
Second, after receiving a commitment from a trusted friend or family member to act on
their behalf in an emergency situation, the patient should talk to them in detail about their
wishes. It is to not rush the conversation. The more detail covered, the clearer the
patient’s wishes will be should an emergency occur. Finally, the patient must document
and notarize their wishes and be sure to distribute copies to all parties involved.
The Advance Care Plan
The advance care plan is the outcome of the advance care planning process. Developing
an advance care plan allows you to make a permanent record of the conversations you
have had and to maintain a clear and up-to-date document about your preferences. The
written portion of an advance care plan can take a number of forms. Some examples of
the possibilities can include but are not limited to the following:
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A letter to the person who will be responsible for this decision-making
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An entry into the patients medical record
A formal, legal appointment of a medical guardian
An advanced care directive or any combination of these things
Recent advances in medical technology permit life to be sustained long after the human
body has permanently lost its natural ability to perform basic tasks. Use of the advance
directive allows patients the opportunity to provide statements, which may be
periodically updated, documenting the type and extent of life-sustaining medical
treatment they desire at the end of life.
Advance directives give patients a voice in decisions about their medical care in the event
that they become unconscious or too ill to communicate these decisions. As long as
patients are able to express their own decisions, the advance directive is not used, and
medical treatment can be accepted or refused. If, however, the ability to participate in
discussions about treatment is lost, the advance directive is used, if it has been duly
executed. Because both federal and state laws govern the use of advance directives,
statutory requirements regarding their use may vary from state to state. All 50 states and
the District of Columbia have laws recognizing the use of advance directives.
There are two types of advance directives-the living will and the durable power of
attorney for health care. The living will allows the patient to place their instructions for
medical treatment in writing. The state law in which the living will is executed may
define when the will goes into effect and may limit the treatments to which it applies.
Typically, the living will contains the patient’s precise choices regarding treatment
options, should they become unable to communicate these choices to their health care
professionals.
The durable power of attorney for health care may also be called the medical power of
attorney, health care proxy or appointment of health care agent. This document enables
the patient to appoint someone to make decisions about their medical care if they are
unable to make these decisions. In many states, the person appointed is authorized to
speak for the individual at any time he or she is unable to make her own medical
decisions, not only at the end of life.
Studies show that while African Americans support the concept of advance care
planning, they are less likely to execute or use advance directives. Some believe that
planning for death initiates the process of dying. "If I don’t acknowledge that I need a
living will or durable power of attorney for health care, then I’m alright. If I do, then that
means I need it."
The African American community is rich with - tradition and symbolism that is largely
influenced by religious and spiritual beliefs and practices. A notion of "a beautiful homegoing" or funeral is often viewed as an end-of-life celebration. However, the research
continues to suggest that African Americans request aggressive medical treatment at the
end of life even when it is unlikely that such treatment will improve outcomes. While a
consistent rationale for this treatment option remains unclear, some have indicated that
their requests are based primarily on mistrust and negative experiences with health care
systems. A further explanation may be the patient’s mistaken belief that any option that
fails to include aggressive treatment is a breach of the standard of care to which the
patient feels legally entitled.
There are varying reasons as to why African Americans do not use advance care planning
documents. Oftentimes the documents are comprised of confusing legal terminology and
are difficult to understand, and in addition, many African American patients are unaware
of the various treatment options at the end of life. In these instances, the health care
providers’ attitudes toward advance care planning and how this information is
communicated have contributed to the failure of African Americans to better utilize
advance directives. Research suggests that while physicians recognize the importance of
advance directives in directing treatment options, they express reluctance in initiating
dialogues regarding these documents with their African Americans patients. In situations
where these conversations have been initiated, physicians spoke for the majority of the
time using vague terms that rarely explored the patients’ beliefs and values. More
desirable outcomes occur when African American patients are provided opportunities to
communicate their views regarding end-of-life options with physicians with whom they
have established trusting relationships and who have demonstrated a cultural sensitivity
to their beliefs and values.
Statistical research reveals that the perception of some African Americans is that if they
had an advance directive, they might be cared for to a lesser degree by medical personnel
and this conclusion seems to be consistent with elderly African American patients as
well. In one study elderly African American patients were significantly more likely to
request the use of life-sustaining medical interventions when compared to other groups
examined, while white patients were significantly more likely to have completed advance
directives. While the literature on the issue of racial differences and the use of advance
directives is somewhat limited, it continues to present two very interesting conclusions:
1) African Americans complete advance directives less frequently than do whites, and 2)
unlike whites, those African Americans and other people of color who have completed
advance directives tend to indicate that they do want life-sustaining medical treatment
administered and continued regardless of the state of their illness, and even when there is
no medical hope of recovery.
Even in instances in which African Americans are medically declared to be in a persistent
vegetative state, life-sustaining medical intervention continues to be the preferred option
of care. Generally, people of color are less likely to complete advance directives and are
more likely to request aggressive end-of-life care. Some emerging research tends to
suggest that a dominant influence on African Americans in their decision-making in endof-life care is their spiritual and/or religious convictions.
In addition to research on African American patient populations, some studies have
examined differences of African American health care professionals regarding end-of-life
treatment options. Of particular note is one study that concluded that while African
American health care professionals have positive attitudes toward advance directives,
they are less likely to have actually executed directives documenting their own
preferences. Further research indicates that African American physicians choose
aggressive medical interventions significantly more frequently than white physicians.
Ultimately, the research clearly indicates that end-of-life planning and treatment choices
are directly related to race and culture. African Americans seem more likely to defer endof-life treatment options to family members, believing that family will make the best
decisions at the appropriate time. Some African Americans indicate that they did not
consider completing advance directives because they believed that informal discussion
and family communications were sufficient. They remain reluctant to sign advance care
planning documents, fearful that they do not understand the documents and or the
documents may somehow be used to prematurely limit treatment before all life-sustaining
measures have been exhausted.
Moreover, their religious and spiritual convictions and general mistrust of health care
systems are also relevant factors to be considered in their failure to execute end-of-life
documents. Accordingly, it is crucial to understand the relationship between the values,
beliefs and experiences of African Americans when examining their reluctance to use
advance care planning documents. Many African Americans view advance care planning
as "giving up hope." Physicians and other health care professionals who treat African
Americans must convey to patients that their cultural and personal values will be
respected when they are dying.
Statistics indicate that African Americans do not have access to good health care. Studies
indicate that populations of color are predominantly served by physicians of color,
including many foreign born medical professionals whose cultural experiences and
training are vastly different from the patient base they serve. It is imperative that medical
school programs work to increase the number of physicians and other health care
programs across America must do likewise. Doing so will improve access by diverse
communities to both health care in general and to physicians and others who are sensitive
to attitudes of diverse populations toward end-of-life care in particular.
Poverty can play a large role in shaping African Americans’ attitudes toward end-of-life
care. Some African Americans perceive that they would not have access to life-sustaining
treatment because they could not afford it, or that the care would not be covered by their
insurance.
A number of situations regarding end-of-life care often find their way into courtrooms.
Advances in technology and medical treatment have heightened the expectations of
patients and their families regarding expected outcomes. Some expectations, often
unrealistic, have been promoted and fueled by mass media attention.
Why would these medical situations stimulate legal debates and discussions of multimillion-dollar lawsuits? Has the courtroom become the final arbiter for setting the
standard of medical care, thus abrogating the traditional judgment and responsibility of
the physician and other health care professionals?
Specifically in the area of end-of-life care, certain ethical and legal issues have become
dominant. They include:
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Competent/incompetent determinations
Validity of advance directives when challenged by family members
Physician-assisted suicide
Withholding and withdrawing of life support
Medical futility
Medical malpractice
Organ donation
Autopsy
While there is no indication that these issues impact African Americans more
significantly than other groups, they remain constant challenges in discussions of end-oflife care for all people. It is important for health care professionals and policymakers to
recognize that medical care, especially at the end of life, is not an exact science.
Treatment options are not, and should not, be considered medical guarantees.
Advance Care Planning- A Family Caregivers Perspective
Camilla Hudson
Patient Advocate
Throughout my childhood and well into adulthood, my parents were the people I could
always rely upon - for advice, for financial assistance, for support of any and every kind.
So, as they aged and their health declined, it was a difficult transition for me to make as
they were less able to function as my support network and I was confronted with the need
to reverse roles and become their primary caregiver. At the age of 78, my mother was
diagnosed with mild-stage Alzheimer’s disease and at that time, she was my father’s
primary caregiver.
My father, then age 79, had a long history of heart disease, high blood pressure and major
complications from diabetes including blindness and a below-knee amputation of his left
leg.
I grew up on the south side of Chicago in a solid and stable, middle-class African
American community. Our household consisted of my mom, my dad, my maternal
grandmother, my younger sister and me. My father was originally from Clarksdale,
Mississippi and had migrated north in the late 1930’s. After an entrepreneurial stint
owning his own candy store, my father went to work for the Rock Island Railroad in the
late 1950’s, where he eventually became their first African American mechanical
foreman. My dad retired from the railroad in 1991 after more than 30 years of service.
My mother, originally from Mobile, Alabama, also migrated to Chicago in the late
1930’s. Like many woman of her generation, she initially worked in a domestic capacity
then later went to work for Montgomery Ward & Company as a billing clerk. My mother
retired in 1982 after more than 35 years of service.
Growing up with my grandmother in the house taught me a lot of lessons that I did not
necessarily understand as I was learning them. When I reached my teen years and my
grandmother’s health began to fail, it was a given that my grandmother would remain at
home with us. Over time, as my grandmother developed dementia, I watched my mother
lovingly care for her mother even when there were times that it had to be exceptionally
difficult for her. My mother never expressed a sense of burden or hardship and she never
complained. In fact, she frequently commented that she was glad that she could care for
her mother, that it was what she wanted to do.
In light of my mother’s Alzheimer’s diagnosis, I was faced with taking on the
responsibility of my father’s care and experienced a steep learning curve with regard to
what needed to be done to ensure my mother’s well being. As I moved into the role of
primary caregiver, one of the first tasks was to determine my parent’s overall state of
affairs. While I’d regularly assisted my mother with my father’s care, I had always held a
supporting role. Now, assuming the lead meant having thorough knowledge of not only
their medical diagnoses and plans for care, but also becoming thoroughly familiar with
their financial situation and their daily care needs as well. While I’d always suspected
that my parents had not taken the time to write and properly execute a will, I really had
no detailed knowledge regarding what plans they might have put in place. Moreover, I
had no solid idea of what types of plans or arrangements they might need and/or want to
establish.
As I began the process of discovery and had initial conversations with each of my
parents, I came to learn that while my parents had planned fairly well with regard to
having sufficient income for their later years, which was apparently all that they had done
to address their long term future needs. Not only did they not have a will, they also had
no plans or directives in place for their long-term medical and health care needs. This was
of especially great concern to me given my mother’s Alzheimer’s diagnosis. Generally
speaking, all of their financial matters were set up making them one another’s primary
beneficiary. Therefore, in the event of my father’s death, all financial and decision
making responsibilities would automatically revert to my mother, who was far from
being of sound mind. Were that to happen, it would be necessary to go to court, have my
mother declared incompetent and then have a judge decide how my parents’ affairs
should be managed and who should have the authority to make decisions on my mother’s
behalf. Needless to say, this was a situation that was far from ideal!
The very idea of it all was somewhat overwhelming. My feeling was that something
needed to be done to correct this situation and it needed to be done immediately.
However, when I talked to my father and told him that it was imperative that he draft a
will and make formal arrangements regarding both his own medical care as well as my
mother’s, he simply didn’t want to hear it. While he didn’t dismiss me outright, he
avoided giving direct answers to my questions and refused to have detailed discussions
on these matters. When I attempted to push him further, he became angry and would tell
me that he didn’t need me to tell him what he needed to do and that he was an adult and
therefore quite capable of determining his own needs. Many times, our conversations
ended in arguments, with both of us fuming. There were times when I just wanted to stop
pushing him, even though I knew I was right about what needed to be done.
As my mother’s illness progressed, the more worried I became about my parents’ lack of
planning. I made every adjustment I could on the financial matters, such as setting up
direct debit from my parents’ checking account for utility bills and various other bills
requiring monthly payments. It was necessary to hire someone to care for my parents
during the daytime hours and I simply paid them from my own checking account and
wrote myself a check from my parents’ account as reimbursement. While it could be
argued that it would have been easier to manage these necessities had the proper planning
been done, nonetheless all of their day-to-day needs were met and somehow or another,
nothing fell through the cracks.
With regard to the medical aspect of things, we were not faring quite as well. First and
foremost, I was not exactly certain what my parents did or did not want in terms of life
saving measures. - i.e. did my dad want "heroic" action taken in the event that his heart
stopped, just how far did he want them to go and, specifically, which procedures would
he want or not want to have performed if he was in a coma or if he had brain damage.
While my family had discussed these things vaguely over the years, we’d never had a
discussion to address the specifics and emphatically determine what either of them might
want or not want. For my mother, given the progression of her Alzheimer’s Disease, it
eventually became an easy matter to say no to all of the above, simply because her mental
status was deteriorating rapidly and it was obvious that her quality of life was already
compromised beyond recovery. During the earlier stages of the disease, I would
sometimes find my mother sitting on her bed or off in a corner crying quietly to herself.
When I would ask her what was wrong, she would respond by saying that she didn’t
understand why the Lord saw fit for her to live this way, or she would ask why the Lord
didn’t just take her and deliver her from the pain of this awful disease.
My father was a different matter altogether. While my mother was physically well but
experiencing a mental deterioration, my father was the exact opposite. He was quite clear
and alert mentally but his physical well being was on a steady and constant decline. This
left him very angry and very bitter. He’d worked hard over the course of his life and had
been looking forward to enjoying his retirement. However, when he finally retired at the
age of 72, he had been forced to retire as a result of his declining health. Therefore,
instead of enjoying his retirement years, he’d spent them getting steadily sicker and
sicker, and in the process, had lost the ability to do many of the things he loved and had
planned to enjoy in retirement.
I slowly came to the realization that it was very possible that my parents were going to
die without a will and/or any other legal documentation in place regarding their finances
and their wishes for their medical care in the event that they were unable to make
decisions for themselves. My mother’s Alzheimer’s disease had already progressed to the
point that she was no longer considered competent and my father was therefore the
designated decision maker given that they were married. I recognized that if my father
were to die before my mother, I would certainly face whatever was required of me. Yet I
remained committed to helping my father understand that he truly needed to "put his
house in order," so to speak, and get all of his financial and medical affairs addressed in
as timely a manner as possible.
Over the course of my mother’s illness, I learned a great deal about the legal aspects a
family faces when a loved one is terminally ill. Learning and becoming fully familiar
with the terminology was just the beginning - living will, durable health-care power of
attorney, a
Do-Not-Resuscitate order (otherwise known as a DNR) and many others. Initially it was
sometimes a little bit difficult to answer a medical provider’s questions fully and
accurately because I just wasn’t certain as to what my father’s wishes were with regard to
many of these matters. However, over time, I learned that while it wasn’t ideal, it was
still acceptable to say that my father did not have a living will and I simply wasn’t certain
as to whether or not he would want to be resuscitated.
As these incidences increased, it led to more discussion with my father as to making
some decisions and putting some things formally into place with regard to his wishes for
both himself and for my mother. Given that my mother had reached the more advanced
stages of Alzheimer’s disease and her overall quality of life was significantly reduced, I
eventually took it upon myself to tell medical professionals that she was to be designated
as "DNR" or Do Not Resuscitate and no one ever questioned my authority to do so.
While I felt completely right and within appropriate boundaries in making this decision, I
still felt that it was my father’s responsibility, as her husband and as her direct next-ofkin, to put the right documents in order so that any and all questions on this matter were
properly addressed. Despite this, my mother’s illness progressed and in the end, she
passed without my father ever so much as verbalizing anything specific with regard to
advance directives for either of them
While I will never really know, with certainty, what changed and what made the
difference in my father’s attitude but after my mother’s death, my father seemed to take
on a different perspective with regard to his financial and medical affairs. I do attribute it
to the finality and realness of my mother’s passing and the fact that my father could no
longer deny - to himself or to anyone else - exactly what was happening in his life. The
first real breakthroughs came on the financial side, when my father finally agreed to talk
to an attorney about his wishes for his property and his other financial matters, and he
admitted that he knew he needed to create a will. Unquestionably, it was very helpful that
the attorney he spoke with was one of my childhood friends, someone my father knew
and remembered from my elementary school orchestra - someone he felt comfortable
with, someone he knew he could trust. Still, despite going through all of the necessary
details and specifics required for legally executing a will, my father remained less than
cooperative about establishing something legal and tangible with regard to his health
concerns. He had reached the point of acknowledging the fact that it should be done and
needed to be done, but he still procrastinated when it came to actually doing it.
Again, over the course of my mother’s illness and in watching the gradual decline of my
father’s physical well-being, I’d made a point of learning as much as I could about my
rights and responsibilities, and just what I could or could not do within legal boundaries,
given the fact that I didn’t have power of attorney for either of my parents. One item of
particular interest was a document titled Five Wishes ©, a living will publication
distributed by Aging with Dignity.
The Five Wishes © document is a unique type of living will that not only addresses the
medical aspects of end-of-life care, but also addresses the personal, spiritual and
emotional aspects of end-of-life care as well. I’d talked to my father many times about
filling out a Five Wishes © document for himself as well as for my mother but he was
never receptive to talking about it in any detail. One morning, after we were well into the
process of drafting his will with my friend/attorney, my dad actually asked me what else
he needed to do. Initially, I didn’t understand what he was asking me, but once I did
understand, I was absolutely amazed and quite surprised. The fact that my father had
progressed to being able to discuss his mortality with me was such a hurdle for both of us
to conquer.
My father, being legally blind, certainly wasn’t able to read over the Five Wishes ©
document for himself but I was happy to read it to him and discuss the various questions
with him. The purpose of Five Wishes © is to allow the individual to choose the person
they want to make health care decisions on their behalf if the individual is not able to
make them for themselves, to state what types of medical treatment the individual wants
or doesn’t want and to state what specific information the individual wants to share with
their loved ones. This type of empowerment was especially important to my father who,
as a proud African American man,
had always been the decision maker for himself as well as his family. Being able to state
exactly what he did or did not want gave him a sense of control and made him feel that
the entire process was conducted on his own terms, not something specified or laid out by
someone else.
As I read through each of the various components of the Five Wishes © booklet, my dad
and I discussed everything in great detail. At some points, my dad would ask me to
explain something a little more fully or differently, while other aspects of the form were
so straightforward that no further explanation was required. In the end, some very
important matters were discussed and decided upon and I finally had the tools I needed to
make care decisions on my dad’s behalf that I knew, without question, were in line with
what he wanted or didn’t want.
When my father reached the last stages of his illness and was ready to make his final
transition, there were many aspects of his care that required my consent or a decision on
my part. Given the things my dad and I had discussed and everything he outlined in his
Five Wishes © document, it was always easy for me to say yes or no to a specific
procedure and know that the decision was completely in line with my father’s wishes.
Unquestionably, there were difficult moments and I had to give some decisions a second
thought but I could always rest assured that my father’s wishes were being honored, no
matter what the outcome. My father passed on April 19, 2006 with his family at his
bedside, content with the knowledge that we’d made the right choices.
Summary
Discussing advance directives with patients can increase the chance that care at the end of
life will be consistent with a patient’s goals and values and will enhance quality
communication, decision making, and the patient and family’s opportunity to come to
terms with death. Physicians and other health care professionals who care for African
American patients must be willing to explain the advance care planning process while
demonstrating sensitivity to these patients’ cultural values and beliefs. Equally important,
it is imperative for African American patients and their families to not only have those
"kitchen table conversations" but to take it a step further by utilizing documents that will
ensure that their wishes are known and can therefore be followed.
As the medical community strives to improve care at the end of life, it is necessary to
consider issues of cultural differences so that all patients can be served equally by the
advance care planning movement. Medical professionals need to familiarize themselves
with the literature on cross-cultural issues where religion, gender, age, socioeconomic
status, ethnicity, sexual orientation, and acculturation status have been identified as
features impacting end-of-life care decisions. It is always the patient who remains the
expert on cultural knowledge and from whom the medical community must elicit
personal preferences, and then follow through by respecting and honoring those
preferences.
bibliography
Ramsey Gloria-APPEAL ( A Progressive Palliative Care Educational Curriculum for the
Care of African Americans at Life’s End) curriculum, Patient Centered Decision Making
, Module 5 2003, 1-9.
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ABSTRACT: The Witness of History: Cultural Narratives at the End of Life
Karla FC Holloway, PhD
William R. Kenan Professor of English, Law, and Women’s Studies
Duke University
Durham, NC
The deaths of African Americans throughout their history in this country too often have
been marked by violence, particularly the violence of racism. In significant ways the
deaths of the young of the African American community have set the public tone for the
meanings of “black death.” The manners that African Americans observe and internalize
the passing of their loved ones are derived from social, cultural, religious, and spiritual
rituals that provide solace, hope, and unity at times of great loss and stress. The black
church and family are institutions that have provided crucial sources of strength and
comfort for a community that has suffered inordinately because of whom its people were:
the enslaved, the emancipated, the segregated, and the integrated. Holloway recounts her
exploration of “black death” in the arts, through encounters with the living, and travels to
the final resting places of black folk ... everyday people and the legendary.
The Witness of History: Cultural Narratives at the End of Life
INTRODUCTION
I have found a space in this collection of papers that is both academic and personal. It is a
space of research and scholarship on death and dying in African American communities,
and it is the space of a citizen of that community touched personally by the kinds of
stories that I have shared in Passed On: African American Mourning Stories—A
Memorial. 1 The stories I recall there cohere into a collective cultural memory, and that
memory frames a certain understanding based on “How We Die,” a color-coded death—
the residue of riots, executions, suicides, targeted medical neglect—a range of bodily
violence. They are stories that urge us not to forget. And in resisting the urge myself to
forget the unspeakable, I have researched and excavated a particular view of black death
that seems, in its intimacy with African American life, a cultural haunting, a “rememory” in the way that Toni Morrison’s novel Beloved insists that “not a house in the
country ain’t packed to the rafters with some dead Negro’s grief.” 2
Although I wanted to both find the expression of that grief and follow it to its conclusion,
I knew as well that black folks, whose indomitable and remarkable presence articulates
the best of this country’s spirit, intelligence and politic, bridges this cultural haunting
with hope, grace, and resilience. Given that paradox, I wanted to come as close as I could
to these final moments as represented in biography, performed in literature and the visual
arts, and experienced within the records of both history and memory. James Baldwin
made clear the associative nexus between black memory and the experience of black
death, writing in The Evidence of Things Not Seen that “memory makes its only real
appearance in this life as this life is ending.” (page xv)
It is an appropriate view of our dying where the only thing we know for sure are the times
past. Memory is our touchstone, and I rely on it here to help shape and explore the
experience of African America with black death.
That private anticipation of death and dying which figures itself into the experiences of
black folks throughout their lives is so persistent and so much more prevalent than it is
for other Americans that lamentation and mortification became a part of the race’s public
persona. The twentieth century’s literature and film, its visual arts and music (from earlyera spirituals to latter-day rap as well as contemporary street corner memorials)
consistently called up the ghostly presence of a passed-on narrative. Black culture’s dead
and dying stories were inextricably linked to the ways that the nation experienced,
perceived, and represented African America. Whether one recalls what W.E.B. Du Bois
called the “sorrow songs,” spirituals such as Soon I will be done with the Troubles of de
world , the burning crosses of the Klan, or the burning communities whose rebellions
provoked white rage and violence, black folk have come to know black death. The cycles
of our daily lives—whether as infant or as an elder—were so persistently interrupted by
the specters of death that we worked this experience into the culture’s iconography and
included it as an aspect of black cultural sensibility. Little wonder that rap artists like
Tupac Shakur or the Ghetto Boys titled their albums “Resurrection” or created cover
photos where they lay reposed in caskets. They knew the marketability of images of
death and dying were intimately tied to the ubiquitous experience of black death and
dying.
African American mourning stories revolve around the angst of the liberal circulation of
black death, that is, without discrimination between black parents and their youngsters,
elders, and their adult children. All could find an eerie familiarity with the fact that the
formative years, the waning years, and each day between these is haunted by the
spiritual’s refrain, “soon one morning, death will come a-calling.” The dead and the ways
of our dying have been as much a part of black identity as have been the ways of our
living.
I. Suffer the children
Certainly our singular stories and memories drift toward, are shared, and are finally
echoed within community narratives. And, because a community’s identity is fully and
expressively engaged in its youth, there is a space as undeniable as it is pitiful in history’s
acknowledgement of the ways that black children are forlorn legates of the cultural
experience with black death.
For many of us, the story of children’s experiences with “public” death is fixed with five
youth. One is Emmett Till who was called affectionately “BoBo” by his mother when she
sent him from their Chicago home to visit relatives in the south. His lynching in
Mississippi in 1954 is remembered by still-aggrieved generations—a lingering
melancholy in the memory of black folk. Bobo’s loss is a familiar because ironically,
scores of years later, we still find no lack of familiarity with a storied loss like this one of
sons and souls of black folk. Indeed, one of the most striking stories of black cultural
history is the recurrent narrative of parental loss.
The second public moment, which was seared into our national memory, is the 1963
assassination of four little girls, Cynthia Wesley, Addie Mae Collins, Carole Robertson,
and Denise McNair, who were murdered in a Ku Klux Klan-engineered bomb blast
during a summer Sunday school service in Birmingham, Alabama, at the Sixteenth Street
Baptist Church. We rehearse the memory of this story so consistently that it has even
appeared in our fiction. Consider the text of the following passage from Toni Morrison’s
novel, Song of Solomon :
Every night now Guitar was seeing little scraps of Sunday dresses—white and purple,
powder blue, pink and white, lace and voile, velvet and silk, cotton and satin, eyelet and
grosgrain. The scraps stayed with him all night... bits of Sunday dresses that... did not fly;
they hung in the air quietly, like the whole notes in the last measure of an Easter hymn.
Four little colored girls had been blown out of a church.... 3
No fiction, however, could displace the pathos of the factual moments—in this instance
recalled by a heartsick Mamie Till Bradley, who went to identify her son Emmett’s body
when he was returned to Chicago :
I didn’t want that body.... That couldn’t be mine. But I stared at his feet and I could
identify his ankles. I said, those are my ankles. Those are my knees. I knew the knees...
and then I began to come on up... until I got to the chin and mouth... those were Emmett’s
teeth, and I was looking for his ear. You notice how mine sort of curls up... Emmett had
the same ears.... [T]he one eye that was left, that was definitely his eye, the hazel color
confirmed that, and I had to admit that that was indeed Emmett and I said that this is my
son[;] this is Bobo. 4
Although the story of children reveals something especially poignant in our histories of
death and dying, there is a dimension of the business of burial—the occupation of the
funeral professionals, where children give us a particularly thoughtful glimpse into the
labor and work days of “death care providers”—funeral home directors and morticians.
These youngsters also appear in stories about these adults because of the generational
link between many black mortuary professionals.
Many youth grew up in homes that housed both the family and the family’s business. One
young man explained to me how he grew up to “stand next to his father” working right
alongside him in the funeral home. He saw his first dead body at thirteen while “looking
for his father in the back rooms of the funeral home, ducking his head into hallways,
calling out for Pops, opening and closing doors,” until he picked the door to the
embalming rooms and saw ’gentlemen back there embalming.’” He was pensive as he
recalled how he “used to really dislike coming down here, I was quite frightened about
death and dying and bodies.” But he has now inherited his father’s business, passing it on
and keeping it in the family, in the way that has come to be common among black
mortuary professionals.
Despite their nearness to the profession, children whose parents were in the business
harbored as many strange understandings of what happens in the back rooms of their
homes as did their friends who did not live as intimately with death. A brief vignette from
some of my discussions with some of the smallest children of black funeral directors and
morticians, who have been known to march into the annual business meeting of the black
professional association, the National Funeral Directors and Morticians Association,
proudly wearing T-shirts printed with the association logo and the phrase “Future
Mortician.”
In my interviews with them, I asked about their parents’ jobs. “He fixes dead peoples,”
one explained. “They hang them [the deceased] up to dry, and then they dress them up
and put them in those boxes.” Another happily shared with me, “I get to push around the
baskets [caskets],” but then he added a more cautionary note, “But I can’t go in there
where he gets the dead peoples from.” Curious about their knowledge, I pressed further.
“Where do they come from?” I asked.
“From the hospital,” one child told me assertively and with just a bit of exasperation at
my lack of knowledge. But then another youngster interrupted his age-mate with a
correction. “No? No he don’t! He gets them out of the freezer and has to wait thirty
minutes, and then he can come in to eat dinner. After that, then they unfreeze, and he puts
clothes on them and then we put them in the car and I help.”
“He gets them out from under the ground.” I was told by an eight-year-old girl—
interested in showing off her superior knowing. She continued. “And then, he puts those
fancy dresses on them [the industry’s name for these is “garments”], and then he puts
them back. After that we can eat.”
There was another participatory mode that children have in my research that was
informative about the subject but very distant from this telling. The stories that emerged
from African American children’s deaths brought the morbid experiences of African
American communities into sharp focus. One would anticipate that theirs should be
unexpected events in the life/death cycle. But from their too familiar circumstances and
oft-anticipated occasions emerged a perspective of a community’s life that told a larger
story than the single, pitiful event of a child’s dying and burial.
Stories like Emmett Till’s haunted our fiction, appeared in autobiography and memoirs,
and because of the excess of their generation and our response, became our folk and news
stories. In essence, children’s stories persist long past their passing on, and their deaths
made apparent both the persistence of memory and the necessity of memorial.
One form of memorial appeared in the artistry of the photograph. Whether they were
Polaroid shots stuffed between family photos in an old black page album, or the formal
photographs of the dead by professionals as James Van Der Zee and Richard Samuel
Roberts, the documentary record of black death was captured in black and white. We
begin to get a glimpse of this ironic intersection of creative imagination and damnable
public circumstance with the great migration of the second decade of the twentieth
century. It dramatically impacted African American’s experiences with death and dying,
and in this era, the dead were disproportionately young. In Harlem, for example, some
funeral directors whose parents were in the business during the 1920s and 1930s recalled
to me the seemingly “endless” procession of small white caskets that became ordinary as
black children succumbed in disproportionate numbers to the tuberculosis epidemic and
the pneumonia—called “consumptive disease”—that ravaged the community. An
October 24, 1929, article in the New York Times led with the headline that “Congestion
Causes High Mortality” and detailed the 40% higher death rate in the crowded
neighborhoods of Harlem than the rest of the city. There was a ready and available source
for artistry like that of Harlem photographer James Van Der Zee.
Van Der Zee was well known for his vivid documentary pictorials of Harlem lifestyles,
but he was celebrated as well for the powerful photographs of mourning that he took
early in the century. He understood his work was in the tradition of archive and
documentary. His photographs might be the only way that some families would have to
remember a child.
One especially poignant Van Der Zee portrait shows a wife gently leaning over her
husband as he sits cradling their dead infant. The image is intentionally constructed as a
domestic vignette. The father is in what seems to be a rocking chair and a radio in the
background suggests the setting is the family’s front parlor. The dead baby, dressed in
white garments like those worn for a christening and nestled in his father’s arm, looks as
if asleep and both parents’ affect suggests an eerie peace as they look lovingly down on
their child with a calm that belies the fact of the still life story constructed for the
photographic occasion. Van Der Zee explained that the picture was not taken in their
home, but it was composed and shot “in the funeral parlor. [A] radio was in the picture to
make it look more homelike. It belonged to the undertaker anyway. It was my suggestion
to have them hold the child while the picture was being taken to make it look more
natural.”
When asked how the parents felt about holding the dead child he replied, “Well it was
their baby.... Most of these babies, they all died of pneumonia; chest gets filled up with
colds because they were living in cold flats. It was a common thing in those days for
people to be without heat.” 5
Contemporary accounts suggested the most dreaded disease in the densely populated
projects of Harlem was pneumonia. But tuberculosis as well took its toll.
A 1934 survey of 20,000 residents of Harlem revealed that 3% had pulmonary
tuberculosis. The disease was so pervasive, that one city block was known among the
epidemiologists as the lung block. These were the days of segregated medical care. Most
hospitals in the city that were treating tuberculosis refused to admit “Negro” patients, so
they were squeezed into the wards of Harlem Hospital, just as they were packed into the
blocks of Harlem streets and its tenement houses. Both kinds of congestion contributed to
the virulence of the disease: a fact that led to the high morbidity and mortality. Harlem
Hospital was referred to as ’the morgue’ in the community and there was great distrust of
its facilities. The common story in the streets was that you went there to die.
But the story of children’s deaths was not limited to the early century. And it was not
limited to the terror of Emmett Till’s boyhood vulnerability or to the benign neglect of
white racism. At the end of the twentieth century, the backlog of children’s violent deaths
in some urban areas made weekday rather than weekend funerals an ordinary event in
some cities and led funeral directors in other cities to refuse to handle the funerals of
children. One funeral director in Buffalo, NY, expressed to me the concern of the
professionals. Explaining to me his reluctance to handle the funerals of children and
youth he said, “They come in here with guns and all, and they act up.”
Youth cultures, always dramatic, noticeable, and brittle, carried through their drama with
their dying. Elaborate rituals evolved for gang deaths in Los Angeles —testimony to the
familiarity of this particular dimension of cultural death.
A cottage industry furnished floral tributes draped in gang colored ribbons, sweat shirts
and T-shirts with the deceased member’s name in a variety of fonts and with a choice of
texts like “R.I.P. Homie.” Street corner memorials, with children’s toys stacked on a
sidewalk, poetry sketched on building walls, and declarations of love and goodbye
messages scrawled on sidewalks became familiar, if transient, urban markers.
The business has had an ambivalent response to the deaths of children. These are
generally not businesses whose finances are especially liquid. Nevertheless,
understanding that a business philosophy should be forward thinking, and because
children’s funerals were nearly always unexpected, “we encourage our funeral directors
to absorb the costs for a child’s funeral,” a North Carolina funeral director and officer in
the state NFDMA explained to me. “The average person does not expect to lose a child,
and there’s no generally no insurance to cover the cost of their burial.” But because of the
precarious finances that haunt too many black businesses, this was a decision that some
African American funeral directors were hesitant to make.
Although every funeral had the potential of adding to their income, some were reluctant
to carry this loss, even though it would likely and eventually lead to other business from
that bereaved family. I was told by some of the younger members of the profession
whose investment in finance and planning was substantial that, “If you do the baby well,
when the mother or daddy dies, we’ll get them on down the road.” With a critique of
some of their colleagues, they noted that “some of them don’t see it, but children’s
funerals give directors exposure to a particular customer base.”
At the end of the twentieth century, these narratives of business and exchange and their
embedded texts of absence and loss found themselves woven into a cultural fabric. Black
death—that is, the dying of African Americans that was in some way related to cultural
identity—continued to be specific and identifiable, as did the cultural familiarity with and
acknowledgment of the consequences of loss.
II. Looking back, and wonderING
The stories of the twentieth and twenty-first century professionals are deeply indebted to
the history of the profession. The dense weave locking the threads of black death framed
the history of the century as well as its people.
After the Civil War, America’s troubling response to its newly freed black citizenry was
a constructed pattern of violence. The extent to which lynching became associated with
black presence rather than black conduct inculcated a sense of vulnerability. And as the
nineteenth century turned, the violence directed toward blacks did not dissipate. In fact, it
increased. It was the singular, colored vulnerabilities of these victims that made the crime
so wicked and vicious. And it was the shared understanding and experience and
anticipation of that vulnerability, whether one was directly affected by this violence, or
just afraid of it, that cooperated in forging a cultural association, a shuddering memory, if
you would, between color and death.
On too many occasions, these were not just crimes of a raging mob in pursuit of one or
two persons. Sometimes an entire community was targeted. In Rosewood, Fla, the
precipitating event was a familiar one—the accusations of a white woman against a black
man. The concluding event was as familiar.
On New Year’s Day 1923, all of Rosewood—its homes and gathering places, the lodge
and the churches, as well as its residents were marked for destruction and death. Seventy
years after the New Year’s Day tragedy, journalist Lori Rozsa wrote of Rosewood
survivors as:
... still tortured with the lingering image of a parent or grandparent being lynched or shot,
of the family home being burned to the ground, of crawling through the woods in the
dead of night... hiding from an armed and crazy mob... hunted and attacked for nothing
more than their color... black man whose left arm was paralyzed was forced to dig his
own grave, then was shot and shoved into it. Another black man was hung from a tree in
his front yard when he told the posse he couldn’t lead them to the alleged rapist. A
pregnant woman was shot as she tried to crawl under her porch for protection when the
mob rode in. 6
And if one might think that these were events of an early century, we need only recall the
1998 lynching of James Byrd in Texas and one might as easily include the 1999 murder
of Amadou Diallo, who stood in the vestibule of his New York City apartment building
and judged suspicious by policemen, was shot more than three dozen times. Such
recurrent moments required studied ceremonial response. It called for ritual.
The century’s consistency seemed to be that black folk were likely to die before their
time in America. And given this sensibility, and what I have come to understand both
differentially and together as both the urge toward life and an insistent hope, the black
community nurtured two institutions—churches and funeral homes—both which would
succor this grief and contain these narratives. Our community gained both expression and
experience in handling this seemingly inevitable complication of black life.
While one might have anticipated black folk as overwhelmed by the persistence of such a
history, stammering and stuttering a fractured response to living in America, instead the
spiritual stature of the black church gave its community a powerful witness. And the
spirit that invested in both the ministerial anticipation and the mortuary experience gave
balm and solace in deeply personal and specifically professional ways. The close
association of the black pastor and mortician represented a consummate merger of cradle
to grave services as two institutions that were both consistently defined through their
racial exclusivity shared clientele for the most critical ceremonies in one’s life.
Ironically, though, the black church has been both a haven from the outer world, while, at
the same time, vulnerable to its hatred and resentment. Its own visibility, coupled with
society’s understanding of its racial association and business made the edifices
themselves susceptible to racial hatred. Throughout the twentieth century, black churches
were assaulted—the target of bombs, arson, and vandalism specifically because of their
racial activism and racial identification.
One dimension of my research, an exploration of How We Die speaks to the complicity
of other institutions, including the institution of medicine in particular. I’ve mentioned
the way in which, early in the century, Harlemites distrusted Harlem Hospital. But midcentury, this time in the South, distrust of the care doled out by doctors and hospitals, and
deaths from what were equally treatable diseases, would fuel a similar mistrust. Black
men died of what they were told was their “bad blood.” Tuskegee Hospital at Tuskegee
Institute, Alabama, was the site of the murderous maltreatment where white physicians
participated in a project funded by the National Public Health Service to study the effects
of syphilis on black men, certain that the effects of the disease—especially in terms of
syphilitic heart disease—were racially distinct.
His only way of proving his hypothesis, as he explained in a letter to a colleague, was
“the continuance of the observation of the Negro men used in the study with the idea of
eventually bringing them to autopsy.” 7
In other words, the physician watched syphilis progress and made no attempt to treat it.
“As I see it,” one of the doctors observed, “we have no further interest in these patients
until they die.” At which time the autopsy, necessary to get the data to fuel the study’s
hypothesis, was urged on the families. The Public Health Service offered burial stipends
in exchange for permission to perform the autopsy.
For forty years, black men in the Tuskegee study died, went blind, or experienced
insanity in an egregious violation of medical ethics and in a prejudicially distorted
hypothesis of medical science. Trust in hospitals and in the government, never strong in
the black community, especially in concert with the numbers of hospitals who refused
black patients, even those emergency victims of accidents, was further eroded by this
sorry episode. To some, then, the way in which this legacy of mistrust re-emerge later in
the century, specifically during the AIDS crisis that began in the 1980s was no surprise.
Like the other issues in black American history, the funeral industry was not far behind in
its response to the crisis, and like the public response, it too suffered from misinformation
and panic. More than one black mortician at a 1990s convention of the professional
association explained to me how these professionals were “especially susceptible” to “the
AIDS,” and it was clear, in our discussion, that they didn’t just mean because of their
contact with body fluids.
One black-owned chemical company’s response to the fear in the black mortuary
community was to manufacture a special fluid for the embalming of victims of AIDS, not
so euphemistically labeled “AIDS O’Dyne.”
Whether as late century AIDS or as early century tuberculosis, when it came to death
rates, race was a consistently predictable factor in patient mortality. This was true in
every decade of the century, for urban as well as rural areas, and for northern as well as
southern regions. The following (Table 1) is illustrative of the point of black death and
dying.
Table 1
Tuberculosis Death Rates, 1939-41
CITY
FOR WHITES
FOR NEGROES
Chicago, Illinois
45.4
250.1
New York, New York
40.4
213.0
Philadelphia, Pennsylvania
44.3
203.5
Detroit, Michigan
36.5
189.0
Los Angeles, California
49.7
137.3
Reproduced from Drake and Cayton, Black Metropolis (204)
Given what some in the death care industry could interpret here as a market survey, it is
possible to use these kinds of statistics to understand how the financial aspects of death
and dying came to matter greatly in black communities. One dimension of the early
twentieth century evolution of the black funeral home was the way in which the role and
perception of the mortician in the black community were closely associated with issues of
class and social status.
As the century began, the mortician emerged as a businessman in a community of few
independent black-owned businesses. Sometimes, he was the only one, other than the
preacher who wore a suit during the week, and the fact that it may have been his only suit
mattered less than the fact that his business gave him license to wear it on days other than
Sunday. Indeed, the “24/7” suit and the authority it brought was not insignificant to the
decisions some young men made to go into “the business.” From his perspective, his
appearance was an important and visible sign of status, from his consumers’ perspective,
as was widely noted among members of the professional organization, “Our people like
to put on a good show.” But “show is going to cost you,” as one Tennessee funeral
director explained to me, even then recognizing the way in which, among black folk,
performance—its drama, elegance, and extravagance—was critical to the occasion.
Many families were concerned not only about the overall extravagance of the occasion,
but also about its details. A Tennessee funeral director told me, “Cars are important for
our people. We want to have four or five cars in the procession. It’s something our folk
are looking for.” Another interrupted and said,
But at the same time, we do strange stuff like—with my business, we have white cars.
Everybody in the city knows we have white cars. And then folk come to me, make
arrangements for the service: pick out the casket, select the flowers, get the obituary
ready, all of this and then they say, “Just one thing: I want black cars.” Now they tell
me—why’d they come to me in the first place? Everybody knows we’ve got white cars.
If they wanted somebody’s black limousines, they should’ve gone across town.
Sometimes we just don’t make sense!
In addition to the issues of cars, caskets are the most attended to item on the list of
costs—and a number of stories I found were related to financing an expensive casket.
Some funeral directors complained that “our people” still believed that caskets were
reused from burial to burial. Even though America was not the home of “slip coffins”
with hinged bottoms that could be lowered halfway into the grave and then opened,
dropping the bodies into the earth, stories of reused coffins were recycled in black
communities. One Louisiana funeral director told me about a time when he drove one of
the limousines in a funeral procession. He left the cemetery following the hearse after the
graveside service had ended. Both he and the driver of the hearse looked back and
noticed that one of their staff had been inadvertently left at the grave site. The hearse’s
driver turned around to go back and get him. To a person, the mournful occupants of his
car emerged from their grief just long enough to comment sarcastically: “See, I told you
they go back to get the caskets!”
In upstate New York, one black family has habitually stayed behind at the graveyard on
the occasion of a death in the family. After the other mourners leave, family members
bring out hammers and axe handles to bang and dent the casket before it is lowered into
the grave. The mortician who told me this story said:
We keep telling them we don’t reuse these caskets, begging them not to destroy their
purchase, but they want to make certain that after they are through with it, that there is
nothing but damaged goods left behind. So now we all know what’s going to happen
whenever somebody in that family goes. I just sit in the car and wait while they just go on
hammering and banging away until they make that beautiful casket look like it came out
of a war zone.... It’s just pitiful to see.
By mid-century, suppliers to the funeral home business were fully appreciative of the
money available from its culturally concerned clientele. As black consumer culture
started to make its own ’dent’ on advertising and product strategies, one of the largest
casket companies in the business, Batesville, designed a line of caskets that catered to
black families, complete with an “African” inspired fabric selections that could be made
into funeral garments for the deceased. The pity is that a best-seller among this line, the
Kente Casket, with its Kente cloth bunting and even an option for an exterior metal in the
Kente design, was used mostly by baby-boomer aged parents to bury their teen-aged or
adolescent children—a decision that not only pointed to the market-line strategy but to
the available market, and cultural experience of black death that guaranteed the viability
of the product line.
III. A season of despair, the power of hope
To discover these stories and those who have lived them, I’ve wandered the exhibits in a
museum of the funeral industry and congratulated soon-to-be graduates as they waited for
final reports from their mortuary school examination. I have visited with funeral directors
and morticians in the places where they practice and the spaces where they plan (Las
Vegas, Nev, in 1996). I have stopped at roadside memorials and lingered in museums and
art galleries. I have consulted archives and manuscripts that ordinarily would be a
historian’s labor—talked with physicians, casket manufacturers, casket shopkeepers,
hospice administrators, makers of funeral “garments,” reporters, palliative care teams,
embalming chemical businessmen, hospital chaplains, neighborhood ministers, and
neighborhood residents.
I also went to the places where, quite frankly, I found as much ease and quiet as was
intended for the residents. My graveyard visits, interspersed between the research and
writing brought certain calm. I came to depend upon their silence and solitude, feeling
comfort and ease in these stilled cemetery spaces. Many times I traveled to them alone
but sometimes with my husband or daughter.
Some years into this process, I left behind the sense I was searching for tombstones. I was
looking instead for Harriet, or Billie, or Richard. It became a personal, even an intimate
sojourn among my cultural kin.
When we found Billie Holiday’s grave in New York City, the lyrics and melody of God
Bless the Child moved from memory to mouth and soon, I was standing before the
tombstone she shared with her mother, in full voiced song. An elderly white couple
tending a grave some rows down left their work and came to where I stood with Billie
and her mother and asked if I knew her. Before I could help it I heard myself say, oh yes,
she’s my great aunt. Of course, it wasn’t at all true, but at that moment, I felt like kin.
Well, we take care of her, they told me. Whenever we come to tend our parents’ graves,
they said, we clear away any weeds in front of Miss Holiday’s as well. I was touched by
their neighborliness and told them so. I think I even said the family will be so grateful. I
know I could have said this, it would have been easy...poetic license.
I left a flower at the grave sites of the twentieth century African Americans whose
memorials I wanted to assure with this project. And despite all the various shades that
have dimmed the past years of my own life, I can remember distinctly each moment
when I discovered a grave.
The shivering embrace of the chilled air on the fall afternoon in Paris is with me still. At
Le Cimetiere du Pere-LaChaise, I walked without sense or care of the time that was
passing, down byways thickened with monuments. I did not know then that there was a
cemetery map that would have led me directly to the columbarium and Richard Wright’s
space there among the cremated.
Later, I actually came to prefer to search without a map, to wander these serene spaces
unguided, giving the imaginations I constructed on my grave meanderings time to
develop. When the caretaker in Monaco told me that not one of legendary singer and
performer Josephine Baker’s children came to visit their mother’s (1986) grave, my
English “tsk, tsk” echoed hers in French.
Others have their stories as well. I was grateful, for example, for the controversial
decision of his family to keep Arthur Ashe and his mother Mattie in Richmond’s
historically black cemetery, Woodland. There is a history of segregated graveyards in this
country and the stories you discover about them are both like the lyrical images of the
distinct decorative art that sketch designs in conch shells across the gravestones, or
carefully broken vessels left beside the grave, noting the spirit’s break with the world of
the living.
There are as well the nearly disabling stories of shame associated with these segregated
distinctions, like veterans being denied burial in flag-draped coffins when they are
returned from wars, as recently as Vietnam, or stories like Whitney Elaine Johnson’s, an
infant who had been buried in Barnett Creek Baptist Church Cemetery in Thomasville,
Georgia, when church deacons approached her obviously grief-stricken white mother and
black father and asked that they exhume their daughter’s body and move her to a
cemetery that would accept blacks.
I found that the memories did not begin and end with those I researched. I, too, was
shaping my own in this journey. There were experiences that helped me understand this
new terrain that I was negotiating and the business of burial. For example, when my
husband and I went in search of Ida B. Wells-Barnett the fearless anti-lynching crusader,
suffragist, women’s rights advocate and journalist, the personnel in the cemetery office
looked at us carefully. But then they surprised us both and asked if we were married. I
said yes, wondering why that was in any way relevant. But when she followed up her
question by asking if we were interested in a plot for ourselves, I realized the business of
burial never concludes.
Perhaps one of the most poignant postmortems of the century is the way that for a
moment near the century’s end, Malcolm X’s modest grave site in Ferncliff Cemetery
told the story of a summer tragedy and echoed his own prophetic words: “I always knew I
would die a violent death, in fact, it runs in my family.”
His grave site had been marked with the small, flat-against-the-ground brass plate, riveted
to a concrete slab, characteristic of all in the cemetery in Ardsley-on-Hudson.
But thirty years after his had been secured to its place, in the summer of 1996, I looked
for Malcolm. At first I was merely disappointed to find the site had been disturbed and
his marker removed, temporarily replaced with a bouquet of flowers, withered in the
summer’s sun, and a T-shirt, with Malcolm’s own words emblazoned in red across the
black cloth. Was it taken by a souvenir hunter? Perhaps. But the absence of his marker
prompted an appreciation for the tragic generational vitality of his own prophecy, and it
brought me to tears. This was the summer of the death of his wife, Betty Shabazz, which
she suffered at the hands of their grandson, Malcolm. Her body, but not her name, had
already been placed in the grassy bronzed pathways of Ferncliff.
The stories of graveyards do not only point inwards, towards the personal, but outwards
as well, to the public. Certainly the dramatic difference between the final resting places of
two men of the century’s most significant stature and renown—Malcolm X and Martin
Luther King Jr.—suggests a very interesting post-mortem narrative. We did not look very
long before we found a parking place near the city block in Atlanta, Ga, that had become
King’s grave site, mausoleum, museum, historical center, and souvenir store. It was early
on a Sunday morning, and the city streets were not very busy. The mega-block of King’s
memorial revealed the constantly evolving post-mortem capitalist construction of his
singular legacy. But when the site is juxtaposed against the modest grave site of
Malcolm, who is buried in a place full of gone-but-not-forgotten souls, the narrative text
of culture, capital, and memory is declared, and this merely through juxtaposition. I felt
as if I had made a requisite tourist stop, as I stood staring across at King’s sarcophagus
safely isolated in the middle of a reflecting pool; but that was all I felt.
Those who gave shape and contour to African America in the twentieth century are
neither fully memorialized in the photographs of their grave sites nor in the narratives
that composed Passed On. But those who are here might appropriately stand in for the
others. The very last grave site I visited before I brought this project to its end was
actually the first. I returned to Paris and Pere LaChaise. My daughter Ayana was with me,
and I wanted her to see Richard Wright. It was the summer of 2000—the first grave site
trip I had taken in about two years. We took the subway from our hotel on the left bank,
easily changing stops at Odeon, and Strasbourg-St. Denis without any difficulty. I knew
the way back. It was an early morning and the cemetery gates reliably rose into view as
we climbed the stairs up from the Metro.
The day was cool but bright and sunny, and we were in no hurry. We strolled casually,
shifting back and forth between the stone paths that edged the cemetery’s thicket of small
mausoleums to the gravelly roadway that stretched out before and beyond them,
remarking only on the chestnut trees that lined the road and the way the sun stretched and
streaked between leafy vistas. I told Ayana how I used to collect chestnuts on my walks
home from school when I was young, and string them into necklaces. We were relaxed
and at ease until we got to the site of those who had been cremated. There I stopped
silent, stilled but for the tears that clouded my sights.
Just as I neared the conclusion of this project, everything I had written transformed from
page to personal when my own son was killed. Standing there in that cemetery, thinking
of my child, our son, her brother, I could go no further. And so we left together, her hand
in mine, turned toward home.
In many ways, this project, and its aftermath constitute my own journey and how I finally
came to the space where bearing witness was less choice than necessity. Writing these
stories became a way of memorial, a measure of hope in the midst of seasons of despair.
I conclude here with a message from a black sermon—words and ideas that have
historically captured what I have come to understand as the spirit of African America.
Despite its vulnerability and challenge, despite its intimate arrangement with black death,
black life urges us all toward hope. And “The power of hope,” as that sermon reminds us,
“is the power to run and not be weary, to walk and not faint...The power of hope is the
power to stand, when no one will stand with you, and having done all to stand, stand
anyhow.” That sermon then turns to a preacher in James Baldwin’s novel, Another
Country.
The preacher’s homily speaks both to fictional moment and fact when he says to a griefstricken family: “Don’t lose heart, dear ones—don’t lose heart. Don’t let it make you
bitter. Try to understand. Try to understand. The world’s already bitter enough; we got to
try to be better than the world.” 8
It is my hope that the power of witness and the resilience of memory is one way to be
better than the world.
REFERENCES
1. Excerpted and developed from Karla FC Holloway. Passed On: African American
Mourning Stories—A Memorial. Durham, NC : Duke University Press; 2002.
2. Morrison T. Beloved. New York, NY : Alfred A. Knopf; 1972;5. 3. Morrison T. Song
of Solomon. [publication city, state: publisher; year:89-90].
4. Thomas J. Emmett’s Legacy. Chicago Tribune. September 5, 1995:5.
5. Van Der Zee J, et al. The Harlem Book of the Dead. Dobbs Ferry, NY : Morgan and
Morgan; 1978:83.
6. Rozsa, L. Massacre in a Small Town. Atlanta Journal and Constitution. January 17,
1993:M1-4.
7. Jones JH. Bad Blood: The Tuskegee Syphilis Experiment. New York, NY : Free Press;
1981:132.
8. Wallace M. The Promise of Hope in a Season of Despair. Passed On: African
American Mourning Stories—A Memorial. Durham, NC : Duke University Press;
2002:189-192.
COMMENTARY: The Witness of History: Cultural Narratives at the End of Life
Commentary by LaVone V. Hazell
Palliative Care Training and Education, (PTEP) New York, NY
On June 26, 2003, it was a privilege to meet Dr. Holloway during the signing of her
book, Passed On , at the Schomburg Center for Research in Black Culture, Harlem New
York and to attend her book presentation on February 27, 2004, at the Last Miles of the
Way Home Conference in Atlanta, Georgia .
As I read the powerful trajectories of grief in sections of the text there was a constant tug
of war between my intellect, my physical senses, and my spirit as I absorbed the powerful
content of the book. The poignant descriptions of “black death and dying” and the
mourning process of African Americans made the uniqueness of our sorrow and grief
apparent. Experiencing a peripheral as well as a personal view of death, I found
approaching this commentary somewhat of a challenge.
I had an epiphany from a personal interface with Dr. Holloway’s descriptions of the
funeral traditions, which mirrored my three decades of familiarity with the funeral
industry. In neighborhoods across the country far too often funeral directors officiate over
the young. The mournful black death among our youth from street violence or racist acts
of hatred and violence has become all too familiar.
Dr. Holloway’s references the 1955 brutal murder of Emmett Till, a young African
American man taken from his bed in the middle of the night, beaten beyond recognition
and then lynched for allegedly whistling at a white woman. She later recounts the horrific
occurrence at the 16 th Street Baptist Church bombing in Birmingham, AL in 1963,
where four little girls; Carole Robertson, Addie Mae Collins, Denise McNair and Cynthia
Wesley Carole were killed as they prepared for Sunday service. These references rekindle
such deep grief and sorrow that I had to lay the book down for a few moments to reflect.
The deaths of these, and so many other black children, are violent memorials of the
attempts of those who sought to destroy and weaken us by killing our future generations.
Sadly, many more deaths of young and old followed as a result of the Civil Rights
Movement.
Oftentimes funeral professionals had to find a delicate balance between the grieving
process that they experienced in burying the young and the profound realization that it
could be one of their own children. Burying so many of the young beckons the question
by the funeral directors...why? Perhaps the answer is, as given by Dr. Holloway in
Passed On , when she quotes the words of W.E.B. Du Bois when writing of his son’s
dying as “liberation,” that these children were “not dead, not dead, but escaped; not bond,
but free.” If I had a dollar for every mother or father who said “now I know where he or
she is,” I’d need a decade to count the sum of their grief. What a sad commentary that the
last place of solace for many parents is the cemetery.
The funerals of young people can be especially volatile, but the presence of the clergy
and family elders seems to maintain a certain measure of calm. To reiterate a segment of
Dr. Holloway’s narrative, “the black community nurtured two institutions—churches and
funeral homes.” Dr. Sharon Wyatt, of the University of Mississippi ’s
Medical Center, states in her research that: “Our findings show that the integration of
religion and spirituality - attending church and praying - may buffer individual exposure
to stress and delay the deleterious effects of disease.” From the baptism of our babies
to their last rites at graveside, we have been nurtured by our clergy and put to rest by our
morticians.
A child’s funeral should be a gift from the community, with the professional services of
the funeral director and clergy and appropriate things from its vendors donated as a way
of giving back to the families who have given their faithful support to the community
throughout the years.
In a passage of Dr. Holloway’s book she references and discusses the somber, amusing
and real life stories that the funeral directors children talk about as she engages them in
conversation during a funeral directors convention. An innocent passage, but one that has
broad implications as to how the next generation will view and look upon death and
dying.
It is unfortunate that children in the black community, regardless of class or social status,
have fallen prey to medical care that underserves by reason of their race. From the
twentieth to twentieth-first centuries, there are still more questions than answers. Still,
one persistent and pervasive question emerges from one decade to another, “Where are
we now?”
As a funeral director I particularly appreciated the Dr. Holloway’s descriptions of the
funerals and grave sites as they related to public figures. Funerals are for the living; as
caretakers of the dead and caregivers for the living, funeral directors are entrusted with
the responsibility to assist a family through the crisis of the death ritual. The funeral and
the gravesite oftentimes reflect the life of the individual. The juxtaposition of the massive
memorial for Dr. Martin Luther King Jr. compared to the modest grave site of Malcolm
X brought to mind the way Muslims bury their dead. Most funerals are very modest, with
the only mandate being that the grave is facing east or toward Mecca .
In the African American community, music and food are pivotal components of the
funeral ritual. Music ties the funeral service together, and the meal or repast, which takes
place after the burial, most often in a church dining hall, is meant to transition grief, and
to honor the dead and their beliefs about the hereafter. African American preachers, stand
on faith that things will get better, they offer their parishioners and the hopeless a light of
hope. They give comfort when the cloud of black death passes over their followers.
W. Franklyn Richardson is the pastor of Grace Baptist Church in Mt. Vernon, NY . In his
chapter, Holding on to Your Song, (2002, Keeping the Faith Haskins, James and
Angelou, Maya ), he urges those members of his congregation not to give into the
destructive emotions following the 1990 beating of Rodney King in Los Angeles, and the
subsequent, and controversial, trial. Richardson ’s introduction states that the message to
follow transcends the moment, giving solace to all facing tribulation, not merely those
facing a trial. It is now 2006, and an incident similar to King’s took place in Florida, with
the beating and death of a young black man by guards in a boot camp. Exactly—where
are we now?
We are indebted to Dr. Holloway’s powerful narrative for “making sure we will never
forget” that “black death and dying” and grief are indigenous to a people who also have
the power of hope and the strength to endure.
The Future of Hospice Care for African Americans: Clinical, Policy, and Caregiver
Perspectives
Fay A Burrs, RN, BSN
National Hospice & Palliative Care Organization
Alexandria, VA
Washington, DC
Bernice Catherine Harper, MSW, MSH, PhD
Center for Medicare & Medicaid Services (CMS)
Washington, DC (Retired)
The Future of Hospice Care for African Americans: Clinical, Policy & Caregiver
Perspectives
In a changing world, the challenge for the health care professionals and providers in
the hospice and palliative care movement is to build upon that which has
successfully served our patients and families and to embrace with enthusiasm the
opportunity to create innovative new programs which appropriately serve and
increase access and utilization by African Americans.
Fay A. Burrs, RN, BSN
Bernice Catherine Harper, MSW, MSH, PhD
Sitting three feet from the bronze and blue casket placed at the center of the church
auditorium is the weathered face of a loving 65-year-old mother who is reflecting over
the last six months of her second son’s life. The physicians diagnosed him with prostate
cancer, but she knows that he simply lost the will to fight this battle here any longer. She
knows that he is gone on to a better place of rest. Folding and unfolding the obituary of
her 45-year-old son, a man who worked too hard and died too soon, she finds relief from
the large host of family members and friends who have come to this place to communally
mourn her loss and provide support. With a gentle smile that offers as much comfort as
she receives, she nods at her next-door neighbor, who was like a second mother to her
son. This valiant mother, who experienced great ambivalence when approached by the
hospital social worker, reflects on her refusal to give upon her son and her fight to
explore other options of treatment as recommended by the care team. Slowly wiping
away the latest round of tears from her eyes, she is grateful for the team that supported
her and managed the care of her son during the last two months of his too short life.1
“African Americans have been caring for their loved ones at home since the beginning of
time. It was never called home care. They have cared for their dying relatives equally as
long. It was never called hospice. Relatives come home from various parts of the country
to relieve the caregivers, and it was never called respite care. They come to give relief to
mama, papa, sisters, brothers, aunts, uncles, cousins, grandma, and grandpa. They talk
with each other, share experience, and give advice and counsel. It is never called
networking. Last, but not least, they serve as volunteers in their own communities, in
their own churches, and on their own streets. They wear no uniforms, record no hours and
receive no awards. Nor do they expect to be rewarded. It is family caring for family,
neighbors caring for neighbors and communities caring for each other.”2
African Americans and other populations of color underutilize palliative and hospice
care, even when they have access to end-of-life care services. The causes for
underutilization may be many and varied. It is necessary to embark upon further scientific
research to gain a complete understanding of the dimensions of this important problem.
As we look to the future of hospice and palliative care for African Americans, it is
imperative to develop an effective strategy to overcome the inherent problems associated
with underutilization and minimized access. A willingness to openly dialog about the
intricacies associated with some of the ugly societal issues must be faced if we are to look
with hope and expectancy to the future with the goal of realizing equitable working
solutions for quality end-of-life care for African Americans.
Background: Review of Hospice Care in the United States
The 1983 public policy decision of Medicare to include hospice care in the Medicare
program has increased the capacity of health care providers to support dying patients and
their families. This grew out of a desire to provide compassionate dignified care that
respects the rights of the individual to choose how they will live until they die. The
number of hospice programs has increased steadily since 1983, and Medicare has become
the primary payer for almost two-thirds of all hospice patients.3
The traditional definition of palliative care is an approach that improves the quality of
life of patients and their families facing the problems associated with life-threatening
illness through the prevention and relief of suffering by means of early identification and
impeccable assessment and treatment of pain and other problems, physical, psychosocial
and spiritual.4 The specialty of palliative care has evolved out of the collective hospice
experience and is a broader application of the concepts of hospice care. Patients who
demonstrate a significant burden of illness and are identified earlier in the disease
trajectory (when death is not imminent—months to years) may benefit from palliative
care services. Hospice would then be the natural transition into the final months of care
when no aggressive curative intervention is desired.
There are an estimated 3,300 operational hospice programs (includes primary and
secondary locations for individual hospices) in the United States. Of the estimated more
than one million patients served in 2004 by hospice programs, 81.2% were Caucasian,
8.1% African American, 6.2% Latino or Hispanic, and 4.6% classified as multiracial or
“another race.” 5 The percentage of African Americans served was significantly less than
the 13% that matches the proportion of African Americans in the United States.
Recent research and literature cites the health disparities experienced by ethnic
minorities, and the reported underutilization of hospice care is consistently noted by
people of color. 6 For those patients who are enrolled in hospice, 50% die at home with
their loved ones, 7% in a hospice unit, 4% in a residential care setting, 7% in a freestanding inpatient facility operated by the hospice, and only 9% in a hospital setting.5
Hospice care provides the most highly developed model of care, providing comfort,
aggressive pain, symptom management, and quality-of-life care. Recent statistics show
that African Americans are more likely to die in the acute care setting of a hospital, with
less satisfaction regarding quality care at life’s end.
This paper will look at reasons for the underutilization of hospice and palliative care
services in the African American community and suggest broad areas of policy changes
that could promote this model of care as part of the spectrum of quality health care
delivered to African Americans during their lifespan. These areas will be reimbursement
issues that impact on access; access to care issues in general; education regarding
cultural proficiency, especially regarding the issue of mistrust in the African American
community; disparities in care; consumer and caregiver awareness and engagement ; and
health care providers’ organizational policies and mission . These critical areas will be
explored to gain an understanding of their impact on referral of African Americans to
hospice and palliative care, and subsequent utilization of those services. Through
appropriate engagement of these critical factors, our hope is that more African Americans
will come to the realization that hospice is not resignation to death but a proven means of
providing quality care at the end of life.
Determining Hospice Eligibility
In order to be eligible for this benefit, a medical doctor and the hospice medical director
must certify that the patient has a terminal or life-limiting condition with a prognosis of
six months or less to live. Physicians have difficulty admitting that they cannot cure a
disease and difficulty identifying when their patients might be appropriate candidates for
hospice.7
The patient must sign a statement electing hospice care instead of routine Medicare Part
A Hospital benefit. The ambivalent feelings evoked by this choice may cause some
patients and families to have concerns over loss of coverage options. The ability to utilize
inpatient services may offer significant comfort to a struggling family that is already
concerned about its inability to cope with the loss of function and disease progression.
Understanding of the benefit as well as a clear expectation of the patients goals and
wishes are one of the keys to assuring that a clear understanding of the services are
received. Without this clarity, the patient or family may feel that it is too early to choose
this option for care.
It is the responsibility of the providers, physicians, case managers, and discharge planners
to discuss options of care and answer patient and family questions, without inserting their
biases, in a manner that patients and families understand. A physician may recertify that a
patient has six months or less to live after two initial 90-day benefit periods, followed by
an unlimited number of 60-day periods. Often, patients and their families will hear “six
months to live or less” and will focus on nothing else. Both health care providers and
patients and families are often unaware of the extended benefit periods available
indicating that the patient has lived past six months; they are also often unaware that
some patients “graduate” from hospice.
When patients graduate, they improve and/or are no longer declining from their disease
and are discharged from hospice. This does not mean cured, simply that the progression
of their disease has reached a plateau and hospice services are not needed until
progression of the disease continues. This window offers an excellent opportunity for
palliative services.
Understanding the Four Levels of Hospice Care
The hospice benefit allows for four general levels of care to manage the needs of patients
and families over the continuum of the illness. These services are required of every
certified hospice program; however, different programs may vary in the manner in which
services are offered.
•
•
•
•
Routine care is care that is needed on a regular basis, part time basis and is
provided in the recipient’s place of residence (e.g. home or nursing facility).
Respite care, the second level of care, is almost always provided in an inpatient
setting. This is generally limited to five consecutive days within a benefit period.
Continuous care accounts for less than 1% of total hospice days and is typically
utilized when a patient is “actively” dying at home and needs a more intensive
level of care and support and does not wish to return to a hospital or acute care
setting.
General inpatient care, the fourth level of care, comprises about 4.3% of all
hospice days. All Medicare-certified hospice programs must have the availability
of inpatient care. Some hospices use contracted beds within a hospital, skilled
nursing facility or long-term care facility.
Under Medicare rules, hospices cannot use more than 20% of their total days in inpatient
care, although an individual patient is not restricted to this percentage. A willingness to
accommodate more inpatient care within the “20% rule” is a possible policy change,
which would enhance the use of hospice in the African American community. This
would, hopefully, begin to address the caregiver burden in the community.
Reimbursement Issues
Access to hospice care via a third-party payer source may present a challenge regarding
coverage of services. Coverage may vary from a nominal reimbursement under smaller
plans, with the ability to negotiate for expanded services under larger fee sources like
Blue Cross Blue Shield and Kaiser Permanente. A source sometimes overlooked is the
hospice benefits of the Veterans Administration (VA). This system offers multiple
options of support and can be combined with other fee sources. There are other private
insurers that will allocate some days for hospice but none as expansive and realistic as
Medicare or VA. Many insurance providers have some form of reimbursement for
hospice care, and their guidelines may be modeled after the Medicare Conditions of
Participation (COP). The Medicare Hospice Benefit utilizes the Medicare Part A (hospital
insurance) for coverage of hospice services.
One area of challenge is the use of culturally insensitive language and a style and manner
that does not reflect a complete understanding of the values and beliefs of the
community.
When the alternative to aggressive treatment is presented in this manner, the potential
beneficiary (and family) may feel unsure about making a choice for services that sound
good and may be ambivalent regarding perceived loss of Medicare coverage. If this
seems to occur, the beneficiary (and family) making the choice requires additional and
patient counseling that fully explains the benefit options and alternatives available for
treatment. The health care providers must realize that the initial delay in making a final
decision for (or against) care is necessary as African Americans gain a sense of comfort
with services that are not traditionally understood. This will be discussed in greater detail
in the following section of determining eligibility.
After electing to use the hospice benefit, a Medicare recipient may have the following
services provided by a Medicare-certified hospice:
•
•
•
•
•
•
•
•
•
•
Physician services for the medical direction of the patient’s care
Intermittent home visits by registered nurses and licensed practical nurses
Intermittent home health aides for services such as dressing and bathing
Social work and counseling services, as well as the provision of spiritual care if
desired
Medical equipment, such as hospital beds, oxygen, etc.
Medical supplies such as bandages and catheters
Medications for symptom control and pain relief, and other medications related to
the end-of-life diagnosis
Volunteer support to assist patients, families, and loved ones
Physical therapy, speech therapy, occupational therapy, and dietary support as
indicated
Bereavement support for families after the death
No Insurance or Inadequate Insurance: the Impact of Poverty
The current statistics reveal that approximately 40% of the American population is either
uninsured or underinsured. In most states, Medicaid will cover traditional aggressive
treatment but not all states have a Medicaid hospice benefit at this time.
What occurs with patients who have no Medicaid reimbursement in their state or who
have no health insurance? The burden of payment for each day in hospice falls on the
patients and their caregivers.
Anyone who has provided end-of-life care to people of color, a disproportionate number
of whom are in poverty and typically receive unequal treatment, recognizes consistent,
recurring themes. The poor experience:
•
•
•
•
•
•
Decreased access to health care and higher death rates.
Increased pain and suffering.
Increased obstacles to obtaining health care.
More sacrifices in order to provide a cure such as loss of a job to take care of a
dying family member.
Inadequate and insensitive educational outreach efforts.
More fatalistic approaches to end-of-life care.8
Cultural Factors Relative to African Americans and the End of Life
Our responses to death have been evident since early recorded history. Fear has been the
dominant emotion. Conscious efforts to reduce this fear have subordinated intellect to
emotions; that is, explicit ideas about death have served primarily to inspire emotionally
generated concepts of immortality.
Expressions of immortality themes are abundant, ranging from the crude animism of
early human beings and modern aborigines to the sophisticated and carefully reasoned
theologies that are an important part of the modern cultural fabric.
The problems of how death affects human motivation and integration at the individual
level have been discussed by Freud, who cited aggression, guilt, incorporation, and
identification with the dead love “object.”
The fundamental needs of dying persons and their families appear to be universal. The
only differences are how societies and groups within societies go about meeting these
needs, which impacts services and determines the quality of care. Caregiving should
enhance the dignity and self- respect of the dying, their families, the caregivers
themselves, and hospice workers as well. Caring for individuals throughout the spectrum
of illness, in general, is a challenge for health care professionals. Caring throughout the
spectrum of illness until life’s end for patients and families of different races, cultures,
creeds, national origins, social and economic classes, and religious denominations and
spiritual beliefs is the greatest challenge of all for the health care professionals. Why?
Because this is the dying individual’s last chance to experience love, deep caring and
compassion, as well as the health care professional’s last opportunity to provide sensitive,
professional and culturally competent care for the individual. This should not only
involve the terminally ill but their families and significant others as well.
Today, health care professionals can make the difference between success and failure in
caring for African Americans and their families at life’s end. Health care professionals
must be selected and trained on the basis of their ability to care for patients and families.
The attitudes of the health care professionals as they formulate caregiving modalities and
strategies will be crucial in the care of African Americans at life’s end.
Defining and Understanding Culture
Culture can be defined as an integrated pattern of human behavior, which includes but is
not limited to thought, communication, languages, beliefs, values, practices, customs,
courtesies, rituals, manner of interacting, roles, relationships, and expected behaviors of a
racial, ethnic, religious, social, or political group; the ability to transmit the above to
succeeding generations is dynamic in nature.9
Culture provides people with a design for living and interpreting their community,
environment and world. It provides human beings with both identity and a framework for
understanding experience. The recent trend and focus of engaging diverse populations
has been aimed at developing an awareness of cultural diversity. Many professionals and
organizations believe that one avenue to gain an awareness is to develop cultural
competency. Culture is one resource that cannot be ignored in this process of building on
the strengths of communities.10 Developing cultural competency enhances the providers’
abilities to establish trusting relationships with the population and community being
served.
The knowledge of cultural differences and sensitivities that professionals should possess
as they deal with different cultural norms or caregiving responsibilities is complex in one
sense yet not so complex in others. The complexity is related to the fact that cultural
differences do not operate in a vacuum just as patients and their families do not exist in
isolation.
They exist within a dynamic, independent, yet interdependent health care system,
involving localities, communities, states, and nations. Our global world is made of
thousands of languages and dialects that have cultural dimensions and cultural
connotations.2
When interacting with the African American population, there is an unconscious
tendency to see the color of the skin and make assumptions about the culture and
experiences. Often overlooked is the fact that all Americans with a darker hue may not
identify their roots as being from Africa. If the health care provider makes assumptions
about a particular ethnicity and culture without taking the time to gain a more complete
understanding of who the patient is, an opportunity for demonstrating respect and gaining
understanding might be missed. Once again, a barrier of mistrust is often erected, and
opportunities for trust and engagement have been lost. Taking the time to find out where
people are from and what road they have traveled as they are facing their final journey is
seen as an honest attempt to understand who they are behind the diagnosis they bring.
This is an initial step of establishing trust between the health care provider and
community.1
Diversity is multifaceted and includes characteristics and qualities that go beyond race,
ethnicity and language. It also includes religion, socioeconomic status, sexuality,
demographic identity, country of origin, and how life experiences shape these.
The United States has been recognized as a cultural melting pot; more recently, however,
experts refer to the United States as a salad bowl. We are all in the same bowl, but we
still have unique traditions, beliefs and values that maintain our own cultural integrities.
Understanding a Mindset of Mistrust and Betrayal in African American Culture
The issue of trust or lack of trust in the health care system by the African American
community has been explored and detailed in health care literature and, most recently,
with the video documentation of oral histories by patients and providers contained in the
APPEAL (A Progressive Palliative Educational Curriculum for Care of African
Americans at Life’s End) curriculum.8
IOM 2003 Report - Unequal Treatment stated that “Racial & ethnic minority Americans
are less likely to receive even routine medical procedures and tend to receive a lower
quality of health care than non-minorities, even when access related factors, such as
patient’s insurance status, income, age and severity of conditions are comparable.”
The decision to engage hospice and palliative care can evoke memories of historical
mistreatment and abuse. The manner in which the initial discussion regarding options for
hospice/palliative care begins sets the stage for acceptance or rejection of end-of-life care
services. 1 As a people, African Americans have been clearly aware of health inequalities
even before research documented the consistent and glaring realities of health care
disparities.
Because of these injustices experienced throughout American life, health care providers
must be willing to understand that the expectation of many African Americans—that they
will not receive equal treatment.
Unless providers are willing to walk in the psychological shoes of African American
families, the opportunity to establish trusting relationships will remain a challenge
unfulfilled. A verbal validation of the patient/family’s history and current circumstances
along with a genuine willingness to openly discuss a real plan that addresses barriers to
care are essential to building trust.11
A long history of prejudice and mistreatment has shaped the mindset of many groups.
African Americans have been particularly impacted. To one degree or another, African
Americans share a legacy of slavery. Part of the culture of African Americans is the
history of slavery and continued disparities, economically and in health care. Providers
must be willing to understand that the mistrust of the health care system evidenced in the
African American community is based a history of malfeasance, neglect and inequality in
health care.
Developing Trust in the Health Care System
While lack of trust is one of the primary issues regarding underutilization of hospice by
African Americans, it is hoped by addressing the areas delineated above that trust will be
built between African Americans and the hospice community. The following case study
is an example of the importance of trust and caring.
Case Scenario
Ambulance 39 rushes through the door of the Emergency Department (ED) carrying a
65-year-old African American gentleman found lying down in his tub not breathing and
without a pulse. It is unknown how long he was in the tub. His wife of 40 years
discovered him. With great effort, she pulled him from the tub and started CPR. When
the paramedics arrived at the house, they inserted a tube for the patient to breathe and
took over the chest compressions from his wife. The health care team thought this patient
was dead upon arrival in the ED, based on the length of time when the patient was last
seen alive and his arrival in the ED. As the paramedics rushed thru the doors they stated,
“The wife and son are right behind us. They are very anxious.” The ED team of nurses
and physicians took over for the paramedics, knowing their efforts would be futile. The
wife and son, upon their arrival wanted to see their loved one; they wanted to know that
the health care team was at least trying to make an attempt to save him. The physician
allowed the wife and son to view the resuscitation attempt of the team. Once the wife and
son saw that their loved one was being worked on, they began to accept the reality that he
would die. When the patient was pronounced dead, the wife and son were able to accept
that the health care team had at least tried to save their loved one and not “just dismiss
him.” Seeing the health care team attempt a real effort of resuscitation established trust
between the team and the patient’s family and made it easier to accept his death.
Racism, stereotyping and prejudice are frequently the “normal” interaction that some
groups experience when they encounter the medical system. Stereotyping, as defined by
the APPEAL Curriculum, 8 is the process by which people use social categories (such as
race, sex) to acquire, process, and recall information about others.
Stereotyping does serve a function. It allows persons who have some fear of engaging
with certain populations an opportunity to simplify complex situations and gives them
greater confidence in their ability to understand, predict, and potentially control situations
and people.
Whether assumptions are made with malevolent intent or from plain ignorance of the
population being served, the consequences are the same. The potential for unequal and
inadequate treatment is real. Health care providers may receive messages about African
Americans because of stereotyping and, consequently, interact with patients from a
flawed knowledge base.
Prejudice and stereotyping are dehumanizing and interrupt the fulfillment of the goals of
quality health care, one of which is adequate utilization of hospice and palliative care by
a population that would benefit the most from it.11
Knowledge is power, and power should be translated into empowering African
Americans and effectively meeting their needs. Health care professionals must be
educated and trained and must develop a knowledge base, and the commitment and
dedication to understanding and appreciating cultural differences. To facilitate effective
interaction and culturally competent care, a provider has to become knowledgeable of the
background of the group/population that is being served.
African American Culture and the Impact of Religion and Spirituality
Among cultural influences, religion and spirituality of African Americans always have
played a special role. Historically the church has been the place of caring, a place of
acceptance regardless of education, training, degrees, economic levels, security, or lack
of security. The church, in all of its diversified venues, has been a sanctuary for many in
the African American community.
The influence of religion and spirituality must always be considered, and health care
providers should familiarize themselves regarding how these influences will factor into
the decision making regarding their health care choices.
For many African Americans, these influences are integral to their existence. Again, we
must be careful not to generalize, because just as diverse as the hues of the skin color of
African Americans, we find diversities of religion and belief at the end of life.
The perception of God and suffering may be a challenge for some providers to
understand when they are providing care to African Americans. Culture fundamentally
shapes how individuals make meaning out of illness, suffering, and dying. With
increasing diversity in the United States, encounters between patients and physicians (and
other health care providers) of different cultural backgrounds are becoming more
common.
Thus the risk for cross-cultural misunderstandings surrounding care at the end of life is
also increasing.12 Many religions are hesitant to entertain discussions regarding ending a
life or withdrawing aggressive treatment.
Some persons accept suffering as a part of being human and a challenge to overcome to
prove their faith in God. Other members of the African American community are
conflicted because giving up aggressive treatment means that they are giving up on their
hope that God will provide not only a spiritual healing in “the kingdom to come” but a
physical healing in the here and now.
Imagine the potential for conflict that could be experienced by a devout Muslim who
believes that “your life is entrusted to you by God and that you should do everything in
your power to preserve it.” The potential for cultural clash among the medical
establishment recommending hospice care, the patient and family, and the
hospice/palliative care organization is high indeed.
It is important that providers not allow their lack of understanding of religion and culture
to cause them to make assumptions about African Americans’ cultural and religious
beliefs. Assumptions, beliefs and generalizations may lead to even greater
misunderstandings during intercultural exchanges.
Health care providers should assess the cultural background of each African American
family they interact with. There are diverse faith traditions and spiritual communities in
which African Americans participate. Faith in God is central for many patients and
families, and their belief will impact many of the decisions made when facing end of life.
The dichotomy experienced from the realization that there is no possibility of medical
cure and the belief that
God knows all and is in control may cause the African American family to hold on
stronger to their faith. These strong statements of belief may not be well received by the
health care provider, and the interaction among hospice worker and patient and family
may create further mistrust.
It is imperative to inquire about values that may affect care at the end of life.
Assumptions and generalizations that people of color living in one particular area have
similar beliefs should never be made. Providers should become aware of the specific
beliefs and practices of the populations they serve; always remembering to inquire
whether an individual patient adheres to a particular belief.
If individualized assessments of religious and faith traditions are done, there is a greater
likelihood that a peaceful and compassionate palliative care will result. The following
key points should be considered regarding spiritual interventions in the African American
population:
•
•
•
Respect the unique spiritual needs of individuals in the African American
community. While hospices are generally able and open to provide a wide variety
of spiritual care through their own spiritual counseling, African Americans have a
rich spiritual heritage that is deeply rooted in community worship.
Spiritual needs are most frequently a major priority, and the need for this type of
counseling support should always be assessed early at the start of care.
It is imperative that hospice and palliative care programs address the spiritual
needs of African Americans in a way that demonstrates respect for the
community’s existing religious framework. One strategy for successful
engagement is to create a network of faith leaders who will be available to
provide spiritual care. A thorough assessment of the different religions and faiths
represented in the community is necessary.
There should never be a delay in providing spiritual support because the hospice does not
know a local imam or has failed to establish relationships with traditional and nontraditional faith leaders.
•
•
The program that recognizes that the church has always been the cornerstone of
the African American community has identified a strong resource as they seek to
provide holistic and quality end-of-life care to the community.
There is a need to develop educational programs that reach out to health care
providers to facilitate a level of comfort in exploring the role of religion and
spirituality and how religion and spirituality might conflict with the values of
physicians.
Health Disparities of African Americans
Common diagnoses for patients receiving hospice care are cancer (50%), heart disease
(10%), lung disease (7%), and kidney disease (3%). African Americans
disproportionately have higher death rates from cancer, AIDS, and cardiovascular
diseases (often secondary to hypertension and diabetes mellitus, which are more
prevalent in African Americans).
Blacks are less likely than whites to receive curative surgery for early-stage lung, colon,
or breast cancer. Ayanian reported the referral rate for evaluation at a transplantation
center was 50.4% for black women compared to 70.5% for white women and 53.9% for
black men compared to 76.2% for white men. In 1993, Whittle et al. documented that
blacks are not referred for coronary artery catheterization as frequently as whites, even
after presenting with symptoms suggestive of acute coronary artery disease. Disparities in
care for life-threatening diseases are seen from initial presentation, referral, treatment,
and ongoing management. Treatment inequalities for African Americans vary in the acute
setting as well as the palliative setting.
While the numbers of African American utilizing hospice and palliative care are clear,
there is still a lack of established research to study the various influences that impact
utilizations and how to improve access to care for all minorities. Greiner et al 13 used
data from the National Mortality Followback Survey to find that African Americans had
40% lower hospice utilizations than white Americans. However, their analysis was not
independent of other socioeconomic characteristics, such as education and income,
suggesting that additional research might reveal disparities not specific to race/ethnicity
but also to socioeconomic status. Another study indicated that African Americans may
not have the necessary knowledge to seek out or accept hospice care, again indicating
that education and income might play a role in improving knowledge of available
services and, thus, increase utilization. 14
Organizational Change
While the traditions and culture of African Americans are rich and unique, they are also
encompassed in a history of mistrust and pain. If providers and health care professionals
are to provide end-of-life care for African American communities in a culturally
appropriate context, there must be addressed a variety of issues that focus on the
sensitivities required by health professionals and their organizations as they care for
African Americans.
The goal is to identify responsibilities and to help professionals to maximize their
potentials and talents in caring for African American families for whom they have the
privilege to serve.
Developing a Sense of Inclusion
An individual in an organization can begin to gain cultural competence through formal
training. However, it takes consistent individual practice and the support of a culturally
competent organization to continue to develop and maintain individual cultural
competence.
Education, sensitivity, and awareness are all essential components of creating a climate
for change, but none of these alone are sufficient to achieve a sense of inclusion. Even
developing cultural competence, changing work practices, and creating leadership and
management accountabilities will have little lasting impact if they do not facilitate a
transformation in thinking. We must let go of the naive assumption that “we can’t dictate
how you think, but can insist on how you behave.” Behavior modification alone does not
produce irreversible change. The commitment to change the organizational climate of an
organization starts at the top with the leadership.15
An organization committed to serving people of color in the African American
community must develop a policy of inclusion. If this is missing, changing the culture of
the organization is the biggest and probably most difficult task that the leadership will
take on.
Board support is critical, and bottom- line support is ultimately responsible for assuring
that the organization is making progress toward achieving its mission. If there is no buyin at this top level, it is highly probably that the leadership of the organization will follow
similarly. The inconsistency in the walk and talk of the organization will be noted by the
community, and additional barriers will be constructed. If an organization is experience
success serving the African American community, it must first evaluate its mission and
commitment to this community.
The organizational leadership is responsible for ensuring that the appropriate policies and
procedures are in place to support the mission, visions, and values of the organization.
The provider must consider how organizational values will affect the commitment to
become a part of the fabric of the community.
There will be challenges inherent in serving a diverse population. But the potential
impact of an organization demonstrating that it respects the traditions, beliefs, and values
of the African American community can be significant. An organization or health care
provider who will evaluate areas of compromise and change can increase the possibility
of successful engagement in the community.
Just like a culturally competent individual, a culturally competent organization develops
and improves over time. As an organization matures in the area of cultural competence, it
will introduce and fully develop the following elements.16
•
•
•
•
•
•
•
Openness and respect for diverse staff and clients.
Access to a diverse cadre of professional interpreters.
Signs and written materials in the languages of its clients.
A culturally diverse staff that ideally reflects its client mix.
Cultural competence orientation and training for medical and non-medical staff at
all levels.
Services and programs that address the very different needs of different client
populations.
Routine evaluation of treatment outcomes by racial, ethnic, and language groups.
Self-Inquiry and Awareness
Health care professionals who would be successful in working with African Americans
and their families must come to grips with their own feelings about their own mortality,
life’s end, and the ’in-between’ life processes. Harper addressed these areas in her book,
Death: The Coping Mechanism of the Health Professional . The premise of this volume
is specifically that “professional anxieties in catastrophic diseases and terminal illnesses
are observable phenomena for which a coping mechanism can be developed.”
The health care professional is then enabled to provide culturally sensitive caregiving
which gives strength and support to patients and relatives. Central to this thesis is the
Schematic comforAbility Scale in Coping with Professional Anxieties in Death and
Dying. The Cross Model of Cultural Competence presents six demarcations on the
Cultural Continuum: Cultural Destructiveness, Cultural Incapacity, Cultural Blindness,
Cultural Precompetence, Cultural Competence and Cultural Proficiency. Characteristics
of “Cultural Proficiency” in the individual or organization are to actively educate others
about cultural differences; move beyond merely accepting, tolerating or accommodating
cultural differences; hold cultures in high esteem; seek out knowledge, develop skills to
interact in diverse environments; and align with and be comfortable interacting in
multicultural settings.
Recommendations and Interventions Strategies Relative to African Americans and
End-of-Life Care
This paper has addressed a variety of areas relative to African Americans facing the end
of life. Culture and its many ramifications was the major focus by design and purpose
because, after all, culture matters, just as race matters for all people. These
recommendations have been forged out of the essence of knowledge and forethought of
long-held traditions, experience, and the current knowledge of the authors of this paper;
albeit, a bit of bias will be involved.
This stands out clearly and for good reason, as the presentation is about African
Americans, perceived, developed, and written by three African Americans. Thus, the
recommendations and suggestions made in the Future of Hospice for African Americans:
Clinical Policy and Caregiver Perspectives are derived from practice, research,
intervention strategies, and recommended policy changes.
Community outreach and marketing of hospice and palliative care services must be
planned and intentional if the desired population is to be maximally engaged. The
grapevine network of the African American community is a powerful force and can be
just as effective as African drums that were used during times of slavery to communicate
critical knowledge and information. Personal experiences and word-of-mouth networking
may make or break any program of services outreach.1
Focus on Strengths Instead of Weaknesses. Engage the community by inventorying its
assets. Community mapping has emerged as a successful strategy for community
engagement. While affirming the history of the African American community, this
interaction focuses on building and enhancing the existing strengths and assets of a
community rather than on reducing or mitigating its deficits. Working with culturally
diverse African American communities requires that we must first acknowledge that
culture is a predominant factor in shaping behaviors, values, and institutions.
Utilize Nontraditional Methods. Traditional methods of going into African American
communities may not yield the same results as other communities. As a community,
African Americans are empowered if they can identify with the messenger and feel that
the message being delivered can be trusted and is in their best interest. Sending an
African American hospice worker to give a talk to a local community group may be an
effective primary measure of engagement. It is important to realize that the barrier of
mistrust is hard to breach, because there is still a belief that the hospice employee is
speaking on behalf of the organization and may not be looking out for the best interests of
the community.
Identify the Real Leaders and Stakeholders. It is imperative to identify the true
stakeholders in the community and be aware that while there may be some similarities,
the socioeconomic class of the community may change the dynamic of the choice of
message as well as messenger. Some social classes may perceive that the words of the
pastor, bishop or reverend are gospel when it comes to making decisions about health
care choices. Other communities may choose to trust the message only if it comes with
science and documented research. Regardless of the community, it is a mistake to assume
that all African American communities share the same value system and resources. The
work of inventorying the stakeholders and leaders must be done on an individual
community basis before proceeding to engage.
Take Advantage of Strong Community Resources. Enlist the help of leaders and
stakeholders in the community to assist in your outreach and engagement. Listen to the
leaders and tailor the outreach programs according to the recommendations of the
community leaders. Recognize that outreach programs can have a greater impact when
implemented in conjunction with community leaders such as ministers and civic leaders.
It may be necessary to allow the community to take the lead and have the hospice
program take a back position as it supports the capacity of the organization. This level of
cooperation will gain significant ground in building trust with the African American
community.
Communication Is Critical. The appropriate use of language and understanding styles
of communication are important aspects of effective engagement. A health care provider
may assume that an African American family is being recalcitrant when they refuse to
sign or accept hospice services. In reality, the client’s level of literacy or issues of trust
should be considered as alternative reasons.
Become a Genuine Model to Your Community. Make sure your hospice is a model for
the community. If you serve a large demographic of African Americans, it is imperative
to explore opportunities of outreach. Engage appropriately, and show respect for the
cultural heritage and uniqueness of the African American community. It is not enough to
say that you care about the diversity of the community you seek to serve. Genuine caring
is demonstrated by a respect and sensitivity to diverse cultures served by the hospice
organization.
This is a huge step toward showing a community that the interests of African Americans
are important to you. This will be reflected in your history of recruitment and hiring
practices and written policies. Hospices cannot simply rely upon sending its own
representatives into a community to provide hospice education.
Do Not Make Assumptions. Don’t assume that because you understand that hospice
services are great that you should enter a home and begin talking about what the
organization is going to do to make someone’s life better. It is imperative to allow the
dialog to facilitate the opportunity of the patient and family to tell their story. Let the
African American family tell what is needed to make life better.
As hospices and palliative care programs become more open to non-traditional methods
of community engagement that have proven to be successful in outreach, they will gain a
greater understanding of the challenges that African Americans face when confronted
with advanced illness; thus, the uniqueness of African Americans’ approach to dealing
with living, surviving, and dying will be better understood.1
Organizations must develop a planned strategic evaluation of their organizational
positions, policies and practices for the engagement of diverse groups of people. The use
of self-awareness tools (many are available on the Web), such as Toolkit for Serving
Diverse Populations available from National Hospice and Palliative Care Organization
(NHPCO), will assist the organization in its strategic outreach.
We have identified the impact of mistrust in the medical system, which has resulted from
abuses of medical experimentation and the legacy of slavery and social injustice; the lack
of cultural proficiency and working knowledge of African American traditions, beliefs,
and values; the need for campaigns that increase the use of advance directives; unequal
treatment in the health care system and unequal access to care; no insurance or
inadequate insurance; and the need for systemic health care practices and policies that
diminish/remove barriers to utilization of hospice and palliative care by African
Americans.
Hospice Recommendations
It is recommended that:
•
•
All hospices focus their activity on access and the development of a fully
integrated effort across a wide scope of health care organizations, social care
facilities, and spiritual and religious programs in creating community ownership
of hospice programs.
Hospice and palliative care programs develop proactive programs that anticipate
the needs of African American communities and that these programs serve as a
•
•
•
•
relationship builder in forging integrated services and continuity of care in the
community
Hospices communicate the opportunities for care and the use of services to
African Americans
Hospices establish higher, more visible profiles relative to their programs and
services for the diverse African American communities within the suburban, rural,
urban, and metropolitan areas.
A willingness to accommodate more important inpatient care within the “20%
rule” is a possible policy change which may enhance the use of hospice care in
with African Americans which may address the lack of and /or caregiver burden
in this community.
Changing the policy of the hospice benefit to a (longer time) where aggressive
palliative management is a model for all patients may provide quality care along
the spectrum of a patient’s disease instead of only the last six months of life.
If hospices and end-of-life programs are going to meet the needs of African Americans,
they need to take new and necessary steps in recruitment of board members, volunteers
and staffs reflective of this population group.
This would include a total agency assessment of end-of-life and cultural issues relative to
African Americans. The organization must commit to develop an African American
strategy or agenda to keep the issues on the front burner, i.e., in the forefront of their
strategic planning. There can be no out-of-sight, out-of mind approach. It is further
recommended that every hospice administration evaluate his or her staff and make the
best determination of who can best undertake an “African American Strategy.” This is
not segregation. It is integration in the best sense of the word.
The summary of recommendations is as follows:
•
•
•
•
•
•
•
Address the mistrust issue directly.
Promote cultural proficiency.
Educate health care providers, the African American community, and the majority
community, and major stakeholders financing health care regarding hospice use
and referral.
Acknowledge and continue to monitor for unequal care/access.
Level the reimbursement field to provide better access to hospice care.
Empower the African American community by identifying its leaders and
resources, and involving them in promoting hospice use.
Develop policies for health care providers that allow for maximum utilization of
hospice by patients.
CONCLUSION
This paper has examined the future of hospice for African Americans by reviewing the
historical perspective, the data regarding hospice use, and reviewing the literature
identifying barriers to hospice use. It has also made recommendations on increasing
hospice use by and for African Americans. While admittedly there are still a lot of
unanswered questions regarding why hospice is underutilized—i.e., research is needed in
this area—implementation of the recommendations in this paper will definitely increase
use of hospice, which overall will begin to address some of the disparities in health care
for African Americans with advanced illnesses, and their families and caregivers.
REFERENCES
1. Burrs F. Asset Mapping: A New Paradigm to Community Engagement. 1st National
Access Conference. National Hospice and Palliative Care Organization. Alexandria, Va.
2005.
2. Harper B. Panel discussion on cultural diversity and end-of-life care. Last Acts End of
Life Conference. May 2002. Tampa, Fla.
3. Walsh D. (1998). The Medicare Hospice Benefit: A critique from palliative medicine.
J Palliat Med. 1998;(1):147-149.
4. World Health Organization. Accessed April 12, 2005.
5. National Hospice and Palliative Care Organization. National Data Set 2004.
6. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health. Institute of
Medicine. March 20, 2002.
7. Sherman DW. Access to Hospice Care. J of Palliat Med. 2000;(3):407-411.
8. APPEAL Curriculum. Payne R. Secundy M. 2003.
9. The National Center for Cultural Competence. Infusing Cultural & Linguistic
Competence into Health Promotion Training. Georgetown University, Washington, DC.
Accessed May 12, 2005.
10. Nardi D, Siwinski-Hebel S. Cultural Issues in Home Care. Advance for Nurses;
2005. Vol 7. No 12.
11. Burrs F. Who is Missing from the Table?: Expanding Hospice Access. Colorado
Hospice Association Spring Conference. Denver, Colo. May 2004.
12. Kagawa-Singer M, Blackhall L. Negotiating Cross-Cultural Issues at the End of Life:
You Got to Go Where He Lives. JAMA. 2001;(286):2993-3001.
13. Greiner KA, Perera S, Ahluwalia JS. Hospice usage by minorities in the last year of
life: results fro the National Mortality Followback Survey. Journal of the American
Geriatric Society. 2003;(51):970-978.
14. Reese DJ, Ahern RE, Nair S, et al. Hospice access and use by African American:
Addressing cultural and institutional barrier through participation research. JAMA.
1999;(284):2518-2521.
15. Guillory W, Guillory D. The Roadmap to Diversity, Inclusion, and High
Performance. Healthc Exec. 2004;(25):26-29.
16. The Manager’s Electronic Resource Center. The Provider’s Guide to Quality and
Culture. Culturally Competent Organizations. Accessed June 1, 2006.
The Future of Hospice Care for African Americans:
Clinical, Policy, and Caregiver Perspectives
Commentary by Congresswoman Donna Christian-Christensen, MD
US Virgin Islands
As a physician with over two decades of medical practice and hospital
administration experience, I have treated patients throughout the continuum of life. I have
been there to celebrate their births and have been present to mourn their deaths. I have
held their hands as they entered the final stages on their journey home and have
comforted their families throughout the heartbreaking process of caring for their loved
ones at the end of their lives. The process is painful and often overwhelming, but can be
ameliorated with hospice care.
If you have never been through it, imagine that your husband, wife, mother,
father, daughter, sister, brother, or friend is told that their illness has progressed to the
point where nothing else can be done for them medically. Envision the agony of being
told that you are dying and trying to reconcile that you are at the end of your life’s
journey and must begin to prepare for the final stage of your life. Imagine the turmoil and
anguish of the entire family that now must find a way to deal with the pain and sorrow of
their loved one dying. More so, imagine the challenge of trying to coordinate the care for
the medical and emotional needs of a loved one who is dying while trying to cope with
the pending loss.
I have seen individuals and families struggle with the challenges I described
above. Many, especially African Americans, struggle through these challenges
unnecessarily alone despite the fact that there are over 3000 hospice programs in the
United States.
These important programs are greatly underutilized by African Americans. As
authors note, of the nearly 1 million patients served in 2004 by hospice programs, more
than 80% (81.2%) were Caucasian, while just 8.1% were African American, and just
6.2% were Latino or Hispanic.
The reasons that African Americans do not utilize hospice care are varied. Some
are afraid to take on the responsibility of taking care of their loved ones at home. Many
others feel that it is their duty to care for their loved ones by themselves rather than to ask
for assistance, and that such a request may be viewed as weakness or that they will be
deserting their loved ones by letting someone else help provide the needed care. Others
may not know exactly what hospice care entails or the services that are provided for both
the patient as well as the family.
Still, many may be deterred by concerns about the cost of hospice care, not
knowing that there are certain programs such as Medicare that will provide hospice care
services at no additional expense.
As African Americans, we have always had a rich history of caring for our own,
especially in sickness and death. Hospice care should not be viewed as moving away
from that tradition, but instead as an additional resource to provide the loved one and
family assistance.
Hospice care should be viewed as an integral part of the continuum of care which
provides the individual with the end of life care to manage illness-related symptoms and
pain so that the individual can pass with dignity, quality and peace surrounded by family
and friends. Hospice care provides a variety of services including pain management and
symptom control; spiritual care; coordinated care; respite care; and bereavement care, to
name but a few. It can be provided in various settings, including the individual’s private
home, a hospital, a nursing home, or a private hospice facility. Hospice care embraces
both the public health and interdisciplinary team approach, with trained professionals—
such as physicians, nurses, social workers, home health aids, and clergy—who help with
the end of life decisions and provide medical, emotional and spiritual support and care
not only for the individual, but also for the family.
This article, The Future of Hospice Care for African Americans: Clinical,
Policy, and Caregiver Perspectives, is timely and necessary because it is crucial to let
our families know they don’t have to go through this difficult time by themselves and to
educate our community about the benefits of hospice care, the resources available, and
how to access them. It is also important that hospice care providers be educated on the
health, cultural and spiritual needs that are unique to the African American community. It
is critical that trust and understanding be established between the caregiver, the patient
and the family by enhancing an understanding of the dynamics of hospice care and the
important role that it can play at the end of life, especially for African Americans. This is
a disparity that we can and must eliminate – the disparity of hospice care.
Theological Perspectives on Death and Dying for African Americans:
Christian & Islamic Perspectives
Paul Smith, D. Min
Pastor
First Presbyterian Church
Brooklyn, NY
Ibrahim Adbul Malik, EdD
Shaykh
Imams Council of New York
New York, NY
Jeremiah A. Wright, Jr., D. Min
Pastor
Trinity United Church of Christ
Chicago, IL
1
Theological Perspectives on Death and Dying for American Americans:
Christian & Islamic Perspectives
A CHRISTIAN PERSPECTIVE
By Reverend. Dr. Paul Smith
Introduction
Death and dying is a topic which occupies the thoughts of many people today,
particularly since the horrific events of the war in Iraq, and the September 11, 2001,
attack on the Twin Towers in New York City and the Pentagon offices in Washington,
DC. More than 4,500 people died, making the counting of these deaths an almost daily
occurrence. The evening news on all major television networks flooded the viewers with
the fact of death and dying. The topic was inescapable. What goes almost unnoticed,
except when some news reporter interviews a family member who has just lost a son or
daughter in the war in Iraq, are the reactions to the fact of these deaths.
Furthermore, the American public watched funeral after funeral being conducted
by clergy of various faiths and nationalities—a new experience for many who were
watching. In particular, African American mourning and funeral services could be seen
on a regular basis. The spiritual strength we witnessed from the African American
community differed from that of white Americans and of other religious groups. In this
paper, we will explore how two different religious (and perhaps cultural) groups—
African American Christians and African American Muslims view death and dying.
A few years ago a member of my congregation said to me, “I made a living, but I
never really lived.” I would say many people have died who never really lived. Death
and dying is a topic which is on the minds of many people today.
Theological Perspectives on Death and Dying
2
The fact of death often leaves us cold and wanting. Death comes unannounced
and without regard to persons. We don’t like death, because it snatches children from the
arms of their mothers and fathers. Death tears down the little empires we have built and
crushes our hopes. We fear death, and rightly so, for we cannot fathom its mystery.
When the storms of death rage and batter us against the rocks of despair, we search for
clues that will give us some understanding of why things are happening.
Death is the one time in life when we as Christians believe we are totally
dependent upon God. Death is inescapable. Yet, for African American Christians, as it
was for their forefathers in slavery, there were three major sources of raw materials in
which the slave placed the alchemy of his desiring and aspiring, “the world of nature, the
stuff of experience, and the Bible, the sacred book of the Christians.”1(p13)
The Bible
The Bible continues to be a major source of understanding and mystery for
African American Christians. The Bible proclaims in the four Gospels of the New
Testament and, in particular, I Corinthians 15:3–7, the life, death, and resurrection of
Jesus.
For I delivered to you as of first importance, what I also received, that
Christ died for our sins in accordance with scriptures, that he was
buried, that he was raised on the third day in accordance with the
scriptures ….2
The Bible is the story about God and his people, and how God delivers his people
from any kind of bondage, including death. The story of Lazarus being raised from the
dead is a familiar passage of scripture used during funerals and with African American
Christians facing death.
3
If God raised Lazarus from the dead, God could certainly raise those facing illness
and death. There is a direct connection between this passage of scripture and resurrection
theology for African American Christians. Resurrection theology is the belief that God
has the final say over any of life’s vicissitudes, especially the final say over death.
James Weldon Johnson in his poem, Go Down, Death, affirms the importance of
the Bible for African American Christians and their understanding that death does not
have the final word for those who believe in God.
Weep not, weep not,
She is not dead;
She’s resting in the bosom of Jesus.
Heart-broken husband-weep no more;
Grief stricken son-weep no more;
She’s only gone home.
Day before yesterday morning,
God was looking down from his great high heaven,
Looking down on all his children,
And his eyes fell on Sister Caroline,
Tossing on her bed of pain.
And God’s big heart was touched with pity,
With the everlasting pity.
And God sat back on his throne,
And he commanded that tall, bright angel
Standing at his right hand:
Call me Death!
And that that tall, bright angel cried in a voice
That broke like a clap of thunder:
Call Death! - Call Death!
4
And Death heard the summons, and he
Leaped on his fastest horse, ...
Up Death rode to the Great White
Throne, and waited for God’s command.
And God said: “Go down, Death, go down,
Go down to Savannah, Georgia,
Down in Yamacraw,
And find Sister Caroline.
She’s borne the burden and heat of the day,
She’s labored long in my vineyard,
And she’s tired_ she’s weary_
Go down Death, and bring her to me.”
While we were watching around her bed,
She turned her eyes and looked away,
She saw what we couldn’t see;
She saw Old Death. She saw Old Death.
Coming like a fallen star. But Death didn’t
Frighten Sister Caroline;
He looked to her like a welcome friend.
And she whispered to us: I’m going home,
And she smiled and closed her eyes.
And Death took her up like a baby,
And she lay in his icy arms,
And she didn’t feel no chill.
And Death began to ride again_
Up beyond the evening star,
Out beyond the morning star,
Into the glittering light of glory.
On to the Great White Throne.
And there he laid Sister Caroline on the
Loving breast of Jesus.
5
And Jesus took his own hand and wiped
Away her tears,
And he smoothed the furrows from her
Face, and the angels sang a song,
And the angels sang a little song,
And Jesus rocked her in his arms,
And kept saying: “Take your rest,
Take your rest, take your rest.3
This funeral sermon and poem by James Weldon Johnson captures the importance
and the significance of the Bible’s story of God and His Son Jesus in the lives of African
American Christians. The Bible’s imagery and focus upon death as a friend and not as
some grim reaper is reassuring. The same God, who gave us his son Jesus, is the same
God who comes to us in a time of trouble and dying. In death, the individual is rewarded
with the resurrection. In the case of Sister Caroline, she puts herself at peace, because
she sees death as a friend. The element of fear is removed, and she is rewarded with
God’s personal messenger, Old Death, who has been a friend of Sister Caroline for all of
her life.
Sister Caroline has been a faithful member of the church, perhaps even a
deaconess in her church, and she is dying, and the family and friends are gathered around
her bed. In my mind’s eye, I can see Sister Caroline’s Bible on the table beside her bed.
Perhaps, songs are being sung as family members feel their own tears gently streaming
down their faces. Yet Sister Caroline, who has believed all of her life in the Bible and the
stories about death and resurrection, has no fear. She sees what the family members
cannot see. She is as comfortable as she can be, because she knows she is going home to
be with God. And how does she know? The Bible has told her so.
6
The Stuff of Experience
The late Arthur Ashe, tennis professional and humanitarian, is another example of
how one’s life experiences shape your understanding of death and dying. Arthur grew up
in a Presbyterian church in Richmond, Va. He understood what it was like to enter a
professional sport dominated by white people. He received blow after blow of racial
injustices on and off the tennis court. It was during his training and development on the
segregated playgrounds of Richmond, Va, that his life’s experiences were formed.
Arthur lived the way he died. As Arthur encountered racist governments in South Africa
and Europe, these life’s experiences sustained him when he contracted HIV/AIDS, and as
he faced his own death.
One’s experiences of daily living are important to one’s understanding of life and
death. Experience is what shapes the African American Christian’s understanding of the
death and dying—experience which is revealed in story of the death of Saul Thurman,
Howard Thurman’s father. Saul Thurman’s job was away from his home in Daytona
Beach, Fla. From Monday morning through Friday evening, he would join his coworkers
at an industrial plant miles away. Here these men would encounter the wrath of the white
overseers and the tyranny of the idle white men who sat around the plant. There were
also times of laughter and fun, as the day came to a close as these African American men
sat around. Lynchings were commonplace, and therefore, death was always imminent.
One day Saul came home early, signaling something had happened. He looked
tired and his body was covered with sweat, indicating he was not feeling well. It soon
became clear to the Thurman family that Saul was dying, and they needed to prepare
themselves. Saul’s wife, Alice, managed to ask him, “Saul, are you prepared to die?”
7
He replied, “Alice, all of my life I have been a man, and I am not afraid to die?”
He was not a religious man, nor was Saul a member of any of the small churches in his
hometown of Daytona Beach, Fla. As a man negotiating the hurdles of living daily with
his back against the wall of segregation, Saul had managed to remain a man. It was the
stuff of his experience, of living each week away from his family, and learning how to
deal with the injustices of his time that enabled him to say to his wife Alice, “I have
always been a man, and I am not afraid to die.”
When I was serving as Arthur’s spiritual adviser, we often spoke about his ability
to not allow the negative experiences of life to shape his belief system. When his illness
became public, Arthur received several letters from several well wishers each offering
ways of dealing with his illness. The Bible and its references to the “resurrection” of
Jesus, and how God always makes a way out of no way, became the mantra for Arthur as
he faced the fact of his death. Throughout our conversations, Arthur almost always relied
upon his understanding and experiences of hearing the Gospel preached. Arthur Ashe
lived the stories of the Bible and looked to the Bible as a source of strength as he faced
death. He was not afraid of death. He wanted to die the way he had lived. And soon one
morning, death came creeping into Arthur’s room. And death was not a stranger. And
with a thumbs-up gesture, as he was being wheeled into the hospital, Arthur embraced
death the way he had lived.
Jean Young, the late wife of Ambassador Andrew Young, relied heavily upon the
stuff of experience as she marched to her death in 1993. As the wife of a well-know civil
rights activist who was directly attached to Dr. Martin Luther King Jr., Jean knew her
husband could die at any moment.
8
Jean was a very religious person and an accomplished teacher and social worker
and mother, Jean relied upon her mother wit and training as the basis for her strength. As
she brooded over her children and the work of her husband, Jean developed a strong
faith.
She read and listened to classical music. Mahalia Jackson’s and Andre Crouch’s
music enabled her to withstand anything that might happen to her or to her husband,
including his death. Jean became centered as she watched and read about the activities of
her husband. As Jean neared death and encountered almost unbearable pain, she never
once feared death. She embraced her own death through her life’s experiences. It was no
surprise to any who knew her, when in her own words, on her memorial program, she
simply said, “What to remember about me? ‘Now, That Was a Woman.’”
My own experience of sitting with people facing death has shaped my ministry
and my theological perspective of death and dying. As an African American minister
serving a multicultural, diverse, and inclusive congregation, I have come to rely upon the
knowledge I have learned from the members of my congregation. It was a result of my
experiences pastoring a racially diverse congregation that I realized I was living in two
racially diverse worlds. One was African American and the other was white. I remember
how my boyhood minister preached the deceased into heaven. Those sermons were
beautiful and poetic, memorable, and deeply moving. The families of the deceased felt
comforted and renewed as they listened to the black preacher.
9
I was able to connect with the poetry of Langston Hughes and James Weldon
Johnson as I listened to funeral sermons in my home church. I grew up believing that
heaven was just on the other side of the Jordan River. That sentiment continues to be
expressed in African American churches today.
My experience in the black church stayed with me through college in Talladega,
Ala, Here I was exposed to Negro spirituals, beautifully arranged by the college choir.
Here I learned about drama, dance, and art, all incorporated into the life of worship in my
college chapel. Although the student body of Talladega College was practically all black,
the faculty was both white and black. For the first time, I was exposed to worship and
religious experiences that included both black and white people. My circle of experience
was beginning to be challenged and to expand.
Consequently, I began looking at life in the African American community through
another lens. My blackness was being challenged by the knowledge of the white
Christians. I was being taught and influenced by black authors and composers I had
never heard of before. I was exposed to speakers, both black and white, who came to
speak in chapel service four times a week, and Sundays. Never before had I experienced
such racial diversity, even in my non-segregated community of South Bend, Ind. The
joyful music I heard during funeral services and Sunday service in the church of my
youth began to change. The preaching was quite different in the chapel of my college
from that of the preachers in the church I grew up with. I was expanding and growing,
and being challenged theologically, which attracted me to considering the ministry as my
vocation.
10
Upon graduation from Talladega College and before heading to seminary, I was
asked to serve as the minister of a small black church in Athens, Ala. I was just out of
college and had little experience other than my college training of leading a congregation.
Here I learned rather quickly how the black church was changing, and this would
eventually influence my ministry. One of my first duties as the minister of this small
church was to preside at the funeral of the city’s most distinguished African American
citizen, and daughter of the local undertaker.
I had only been in town three weeks and in my life had never conducted a funeral.
Yet the family had confidence in me, because I was a graduate of the same college
attended by the daughter of the deceased. The family wanted something “dignified, calm,
quiet and spiritual.” Clearly, these elements were not traditionally present in the black
churches of Athens, Ala. All eyes were upon me, and I was also very nervous. Yet, I
realized the experiences at college had prepared me for just a moment as this one. I was
able to not only conduct the service, but I managed to inspire a community of people who
only knew me as this new young minister who had only been in town for three weeks.
I have conducted many funeral and memorial services since that day in 1957 in
Athens, Ala, but the stuff of my experiences in the multicultural and diverse setting of
Talladega College gave me what I needed as I conducted the funeral in Athens that hot
summer day in 1957. The spirituals I had heard and learned from the college choir and
the prayers offered by distinguished white and black clergy from around the country were
of great value to me. The new rural culture I had been thrown into was of tremendous
value to me, and I remembered the wisdom of the people who had brooded over me. The
stuff of my experience continues to guide my ministry in Brooklyn, NY, today.
11
The World of Nature
Nature was a constant companion for the African American slaves. Moon and
stars, wind and rain, and mountains and valleys are all mentioned in the Bible. The world
of nature was a place for spiritual discernment and understanding. When the brutality of
slavery became unbearable, the slaves would retreat to mountain ranges or to the “hills
from whence cometh our help.”2 They would find refuge in the cool waters of a river.
Their music, the early Negro spiritual, often portrayed the influence of nature in their
existence. Gonna lay my burdens down; Down by the Riverside; There’s a Star in the
East on Christmas Morn; Rise up Shepherd and Follow; Go Tell It on the Mountains;
and Deep River, My Home Is Over Jordan to name but a few of these spirituals. There is
something mysterious and spiritual about nature, and those mysteries brought comfort to
the slaves.
The spiritual Deep River, My Home Is Over Jordan is often sung at funeral
services in the black church. African Americans identify with the river because it is
always moving and always flowing. African Americans attribute the flowing and ebbing
of the river to life and death. The river is the bearer of salvation. The Jordan River, in
particular, expresses the theology of eschatology. Death occurs on one side of the
Jordan. Resurrection occurs on the other side. Jordan is often equated with heaven as
well. Eschatology is defined as the doctrine of last things. The Old and New Testaments
talk about eschatology, particularly the Book of Revelations. Eschatology involves
dreams and visions of a better place or a better life. Thus many Negro spirituals are
eschatological in form. The slaves sought a better life, a better place, and better
circumstances for themselves and their families.
12
The world of nature was a refuge for African Americans. Poetry, dance, music,
and song are the stuff of the world of nature. Just as Jesus retreated to the mountains
before he began his public ministry, so do African Americans. In many of the slave
narratives, reference is made to the slaves “stealing away” to the mountains or to the
rivers, where they could talk to Jesus. There is something very spiritual and comforting
about lifting up prayers to God while the full moon is visible. I remember as a boy how I
sat at the top of the stairs in my childhood home whenever something was weighing
heavily upon my mind. A full moon was the route to freedom because it provided light in
the darkness of the evening. My spiritual development began by acknowledging the
influence of the moon and the stars. There is something very deeply moving about nature
and that something continues to inform me to this day.
The world of nature provides the spiritual awareness and awakening necessary
when life is waging war against one’s spirit. Howard Thurman writes in his
autobiography, With Head and Heart, how he would row himself out on the Halifax
River in Daytona Beach, Fla, in order to make his connection with God. He said he
found comfort and strength not only in the river but in the stars and moon, which were
more visible from his boat. Looking up at the stars in times of trouble and despair
became a spiritual exercise for Howard Thurman.
There appears to be a mystical element about the world of nature. For example,
the comparison of life to the river is an interesting metaphor for Howard Thurman. In his
book, The Negro Spirituals Speak of Life and Death, Thurman equates life to the river.
13
The fascination of the flowing stream is a constant source of wonder and beauty to the
sensitive mind. It was ever thus … the relentless movement, the hurrying, ever-changing
stream has ever been the bearer of longings and yearnings of mankind for a land beyond
the horizon where dreams are fulfilled and the deepest desires satisfied. The river, in the
first place, has a very simple beginning. It increases in momentum, in depth and breadth,
in turbulence as it makes it journey down the broad expanse of America, until at last it
empties itself into a larger body of water. Life is like that. It has its flood times. The
river that was once quiet and peaceful has times of drought and times of flood.1(p66)
Life is like the river for many African Americans, especially when it comes to the
matter of suffering. Suffering is an ever present companion when death and dying are
around. Suffering is also a part of the experience of life. It was so for Jesus of Nazareth.
How does one handle the experience of suffering? Is suffering a natural part of life? Do
some people suffer more than others? These questions and more are on the minds of
those who are faced with death and dying. The Bible, the stuff of experience, and the
world of nature are instructive here as well.
I have yet to mention prayer in this writing, but I do so now against the backdrop
of the Bible, the stuff of experience, and the world of nature. I have always believed that
the power of prayer is one of the most meaningful ways one can communicate with God.
I am aware that others may prefer to direct their prayers or even meditations to what they
refer to as a higher power. Through prayer one brings all of the resources—the Bible,
experience, and nature—he can muster. African Americans are a praying people and
their clues for prayer are taken directly from these three sources. Prayers offered in the
hospital by the bedside where a loved one is near death or has died are extremely
important. Again, Howard Thurman says “the issue of prayer is not the prayer; the issue
of prayer is God.”4
14
In his book Meditations of the Heart, Howard Thurman refers in one of his poems
to “The Strings in my Hands.” He says:
One thread is a strange thread,
It is my steadying thread;
When I am lost, I pull it hard and find my way.
When I am saddened, I tighten my grip
And gladness glides along its quivering path;
When the waste places of my spirit
Appear in arid confusion,
The thread becomes a channel for newness of life.
One thread is a strange thread- it is my steadying thread.
God’s hand holds the other end.5
African Americans are steadied by the good news from the Bible which affirms
that God is always holding the other thread of our lives. Our personal experiences and
encounters with the unjust conditions of this world become building blocks for survival.
The steadying thread is held tight when death looms over us and our community; yet we
are sustained always by remembering that there is in God sufficient strength, whatever
our needs may be. We find our places in the world of nature where we might go to pray
and let the dust of life settle, just long enough for us to remember that whether we live or
die, we are still with God.
15
In the Name of Allah, the Beneficent, the Merciful
AN ISLAMIC PERSPECTIVE
By Shaykh Ibrahim Adbul Malik, EdD
Introduction
I would be willing to hazard a guess that some readers of the compelling words of
my colleague, Dr. Smith, might have found themselves either saying, or wanting to say
“Amen” time and again. And why not? He took you along with him on his personal
journey of discovery and transformation and of spiritual service to a growing community
of committed believers. And along the way, he took time to minister to persons who
were marching to the beat of a different drummer but whose concerns as they approached
their final exit paralleled those of their believing brothers and sisters.
Death is a fact of life. None of us, believers or non-believers, can escape it. And
indeed, when it comes knocking, there is no place to hide. But for Muslims, that is only a
part of the story. It is in the rich details of the full Qur’anic account that Muslims find
justification for their attitude toward death, for their approach to life and living, and for
their certainty about the hereafter.
I will soon reveal many of these rich details. Let me, though, first establish a few
fundamentals of Islamic belief. To know these is to understand why Muslims may
express certain attitudes about their life experiences that many of their Christian friends
and colleagues may consider unusual.
16
Islam
1. Allah is a God of Mercy. Undoubtedly, Allah, the Creator of the universe,
Omniscient, Omnipresent, Master of the Day of Judgment, is also known by many other
names. But the attributes which Allah, Himself,6 emphasizes over and over are “ArRahman” (The Compassionate) and “Ar-Rahim” (The Merciful). In the first two
quotations that follow, Allah is speaking.
With MY punishment, I visit whom I will. But MY mercy extendeth to all things. That (Mercy) I
shall ordain for those who do right, and practice regular charity, and those who believe in OUR
signs. (Qur’an 7:156)
I am indeed the Oft-forgiving, most merciful. (Qur’an 15:49)
Allah has willed upon Himself the law of grace and mercy. (Qur’an 6:12)
2. Islam is a religion, established, and named by Allah.7 But
equally, Islam is a way of life. Hence, a righteous Muslim declares, (as
Allah instructed Prophet Muhammad):
Behold, my prayer, and all my acts of worship, my living and my dying are for
Allah [alone], the Sustainer of all the worlds. (Qur’an 6:162)
3. Islam teaches that everything about this world is temporary and delusive, and
our limited time on earth is ultimately a preparation for the much more enduring and
important life to come.
17
Know, O men that the life of this world is but a play and a passing delight, and a beautiful show,
and [the cause of] your boastful vying with one another, and [of your greed] for more and more
riches and children…. But [the abiding truth of man’s condition will become fully apparent in the
life to come: either suffering severe, or God’s forgiveness and HIS goodly acceptance. For the
life of this world is nothing but an enjoyment of self-delusion. (Qur’an 57:20)
In his moving description of how Sister Caroline faces her last moments on earth,
Dr. Smith wrote, “She ‘sees’ what the family members cannot see. She is as comfortable
as she can be, because she knows she is going home to be with God. And how does she
know? The Bible has told her so.” [emphasis mine]
Just as Christians find comfort and guidance in the Bible, Muslims also turn to
their Holy Book, the Qur’an, for their comfort and guidance.8 So what does Qur’an tell
us about death and dying? Let us explore together.
The Qur’an Says
We die only when Allah wills it.
And no human being can die save by God’s leave, at a term pre-ordained… (3:145)
Death is the lot of every one of us, as decreed by Allah.
WE9 have [indeed] decreed that death shall be [ever-present] among you. But there is nothing to
prevent US from changing the nature of your existence, and bringing you into being [anew], in a
manner [as yet] unknown to you. (56:60–61)
18
When it is our time, we cannot avoid death.
O you who have attained to faith! Be not like those who are bent on denying the truth, and say of
their brethren [who die] after having set out on a journey to faraway places, or gone forth to war,
‘Had they but remained with us, they would not have died,’ or, ‘they would not have been slain’;
for God will cause such thoughts to become a source of bitter regret in their hearts, since it is God
who grants life and deals death…. (3:156)
When it is time, delays are not possible
Never does God grant a delay to a human being when his term has come....
(63:11)
There is no hiding place when death comes knocking
Wherever you may be, death will overtake you, even though you may be in towers raised high….
(4:78)
Allah instructs that both our lives and our deaths are in HIS control.
O prophet, tell them: “It is Allah who gives you life, and later causes you to die. Then it is HE
who will gather you all on the Day of Resurrection, about which there is no doubt. But most
human beings understand it not.” (45:26)
So much for part one of the story! As one author put it, “[Death] is the first stage
of the Hereafter…. It marks the entrance into that realm.”10
And indeed, Qur’an confirms for us over, and over, and over again, the truth of
the author’s statement. There is more to look forward to beyond death—much more. But
what that will be for any one of us will be greatly determined by what we do before we
are summoned. I will let Qur’an speak on the matter.
Allah is the supreme ruler of all the universe, and the ultimate destiny of us all is to
return to HIM for judgment on the Day of Reckoning
19
HE [Allah] governs all that exists from the Celestial space to the earth. And in the end, all shall
ascend unto HIM [for judgment], on a Day, the length whereof will be [like] a thousand years of
your reckoning. Such is HE who knows all that is beyond the reach of a created being’s
perception, as well as all that can be witnessed by a creature’s senses or mind, the Almighty, the
Dispenser of Grace. (32:5–6)
The Day of Reckoning is a surety, because Allah says so.
And in the end HE will gather you together on Resurrection Day, [the coming of] which is beyond
all doubt. (45:26)
I [Allah] call to witness the Day of Resurrection.11 (75:1)
On that Day, Allah will raise up all who are in their graves.
On the Day, when the summoning voice will summon [man] unto something that the mind
cannot conceive, they will come forth from their graves, with their eyes downcast, [swarming
about] like locusts scattered [by the wind]. (54:6–7)
Out of this earth have WE created you, and into it shall WE return you, and
out of it shall WE bring you forth again. (20:55)
On that Day, you are on your own. No parent will be able to help his/her child. No
child will be able to help her/his parent. Only Allah knows when.
O men, be conscious of your Sustainer, and stand in awe of the Day on which no parent will be of
any avail to his child, nor a child will in the least avail his parent. . . . Let not then the life of
this world delude you, and let not [your own] deceptive thoughts about God delude you. Verily
with God alone rests the knowledge of when the last hour will come…. (31:33–34)
Even our body parts will witness against us on that Day.
On that Day, WE shall set a seal upon their mouths, but their hands will speak unto US, and their
feet will bear witness to whatever they have earned [in life]. (36:65)
20
After the cataclysmic events of the Last Day, Allah declares that HE will “create a
new earth and heaven,” just as HE created the one with which we are familiar.
On that Day, WE shall roll up the skies as written scrolls are rolled up. And as WE brought into
being the first creation, so WE shall bring it forth anew—a promise which WE have willed upon
OURSELVES. For behold, WE are able to do all things…. WE laid it down in all the Books of
divine wisdom, that MY righteous servants shall inherit the earth. (21:104–105)
On That Day, Allah, Himself, promises absolute fairness to all
But WE shall set up just balance scales on Resurrection Day, and no human being shall be
wronged in the least. For though there be [in him but] the weight of a mustard seed [of good or
evil], WE shall bring it forth. And none can take count as WE do.
And yet, whoever does [the least] of righteous deeds, and is a believer, withal, his endeavor shall
not be disowned. For behold, WE shall record it in his favor. (21:47, 94)
Allah promises full, fair rewards, even to those who cared only about the things of
this life.12
As for those who care [for no more than] the life of this world and its bounties, WE shall repay
them in full for all that they did in this [life], and they shall not be deprived of their just due
therein. [Yet] it is they who, in the life to come, shall have nothing but the fire—for in vain shall
be all that they wrought in this [world], and worthless, all that they ever did. (11:15–16)
Allah promises special mercy to believers who live righteously and pay zakaah.13
… I will ordain special mercy for those who do righteous deeds, pay zakaah and believe in our
revelations. (7:156)
21
Allah rewards your good deed tenfold, and your evil deed, one-to-one.
He that doeth good shall have ten times as much to his credit. He that doeth evil shall only be
recompensed according to his evil. No wrong shall be done unto (any of) them. (6:160)
Allah lays out the punishments for the wrongdoers and the naysayers.
WE have ordained that [in the Hereafter], hell shall close upon all who deny the truth.
[But] one day, WE shall summon all human beings, [and judge them] according to the conscious
disposition which governed their deeds [in life]. . . . Yet, none shall be wronged by as much as
a hair’s breadth. (17:8,71)
WE shall save [from hell] those who have been conscious of US. But WE shall leave in it the
evildoers, on their knees.
WE shall record what he [who continually denies the truth] says, and WE shall lengthen the
length of his suffering [in the Hereafter]. (19:72, 79)
Qur’an has spoken—elegantly. How is it possible for a righteous Muslim to read
these magnificent words of assurance from Allah and not be moved to action? From HIS
unequivocal declarations that we will all return to HIM, and that the Day of Reckoning is
absolutely coming—“a fact about which there is no doubt,” HE gives us a detailed
preview of what we can expect—the good and the bad. And even though HE is
describing a “realm beyond the reach of human perception,”14 we cannot help but be
affected by the images of our imperfect human imaginations.
22
In the first part of this paper, Dr. Smith presented some profiles typical of African
American Christians. While it is true that Christianity and Islam differ in some important
theological matters, beyond their common Abrahamic connections, they also share the
fact that African American Muslims are sociologically very like African American
Christians, which Dr. Wright observes in the third part of this paper. And yet, as they
operate within the theological framework of Islam, many of the traditions they share with
the African American Christians necessarily must be expressed differently.
In the matter of prayer, for example, African American Muslims, as all Muslims,
are obligated to perform the formal prayers (salaat)15 five times a day, seven days a week,
three hundred sixty-five days a year. No comparable obligation exists for Christians.
Still, as Dr. Smith observed: “African Americans are a praying people,” whether
Christian or Muslim. Beyond the formal prayers, Islam also encourages Muslims to pray
informally, whenever, wherever, however they feel the need to do so. You can be sure
that African American Muslims pray just as often and hard as their Christian brothers and
sisters, when faced with death and dying.
Here again, Allah is most reassuring in two critically important ways for all of us
who pray. HE declares that HE is always with us, and that HE hears our supplications.
It was WE who created man, and WE know what dark suggestions his soul makes to him. For WE
are nearer to him than (his) jugular vein. (50:16)
And if my servants ask thee about ME, behold I am near. I respond to the call of him who calls,
whenever he calls unto ME. (2:186)
23
As a Muslim, I am doubly encouraged by these statements. First, the message
itself would be enough, so compelling is the assertion that the Creator not only hears my
pleas, but is closer to me than one of my internal organs. But when the message comes in
the first-person language of Allah, “WE are nearer…” and “I respond…”—well, what
more could I ask?
The answer to that rhetorical question is nothing. But what I am feeling is
overwhelming gratitude and a deep desire to acknowledge the dual gifts of divine
assurance. And formally, at least seventeen times every day, I get the chance to
acknowledge. During the salaat, practicing Muslims recite, in affirmation of Allah’s
declaration: “Sámi Alláhu limán hámidah” (Allah hears the person who thanks HIM).
Prayer is so central to the Islamic way of life, that many Muslims actually plan
their daily activities around their prayer lives. Humans being humans, even the most
devout among us can benefit from reminders. This verse from Qur’an both instructs and
reminds that we pray only to Allah, who is the ultimate truth16 and that prayer without
faith is futile.
For HIM (alone) is prayer in Truth. . . . For the prayer of those without Faith is nothing but
(futile) wandering (in the mind). (13:14)
It is unlikely that a righteous Muslim would knowingly violate the first
reminder—pray to Allah alone. But we can all take to heart the second warning about
empty prayers, and be ever mindful, when we do pray, to infuse our words with the
essence of our faith. And surely, if there is any single time when we truly need Allah’s
help to deepen our faith, it is when we are facing the challenges of personal tragedy
and/or adversity.
24
CONCLUSION
Thus far each of us has focused almost entirely on how our particular religious
tradition instructs and influences its devotees in their understanding of and responses to
the realities of death and dying. This was not only our assignment but a very proper
approach, consistent with the relationship between a person and his/her religion. But we
would be missing a God-given opportunity, if we did not also advance the cause of
greater mutual understanding and productive collaboration across religious boundaries.
In calling for “greater mutual understanding and productive collaboration,” we are
doing more than simply following the dictates of survival politics. We are in fact echoing
the invitation which Prophet Isaiah brought from God to the disobeying people of Judah:
“Come now and let us reason together,”17 and the words which Allah instructed Prophet
Muhammad to speak to those who disputed his message: “O people of the Book, let us
come to an agreement on that which is common between us.”18 In both instances, God is
urging a collaborative process which is far more likely to bring about understanding and
mutual respect, than continuing in a state of ignorance and mutual suspicion.
The most obvious example of “that which is common between us” is what we
have been writing about throughout the paper:
We are African Americans (and all that that implies),
We all experience the pain and anxiety of death and dying,
We believe in the power of prayer,
We believe in Life after Death,
We are all people of the Book.
25
But typically, we remain isolated from each other, wrapped in the fabric of our
own scriptures, unmindful of the ways in which they overlap, focused, instead, on the
perceived, often misrepresented differences between us, unresponsive to the more
compelling truth that binds us—our shared humanity, the gift to each of us from our
Creator.
We already have examples of influential leaders, religious and non-religious,
Christian and Muslim, who have taken steps towards rapprochement. It is now for us,
individually, to follow their lead, to reach out to our neighbors across the religious divide
and invite the kind of respectful dialogue that can foster understanding, even lead to joint
activities for mutual benefit.
We pray that our Creator God give us the grace to speak kindly to those with
whom we may have differences in matters of religion: Let there be no argument between
us! God will unite us, and the journey is to God.19
26
THEOLOGICAL REFLECTIONS ON DEATH AND DYING
Christian and Islamic Perspectives
By Reverend, Dr. Jeremiah A. Wright Jr.
I come to this task as a practicing Christian minister. I was ordained to the Christian
ministry in 1967, and I have been pastoring the Trinity United Church of Christ in Chicago, Ill,
since 1972.
I also come to this task as a student of F. Rahman, one of the nation’s leading Islamists at
The University of Chicago and the Oriental Institute in Chicago, back in the 1970s. My area of
concentration while studying Islam in West Africa was the Tijaniyyah among the Bambara, the
Fulbe and the Tukolur.
At Chicago I studied Islam in West Africa for six years under Rahman, and as a historian
of religions, I studied for six years under Dr. Charles H. Long. These studies did not make a
practicing Muslim, but they do give me a perspective on Islam that the ordinary Christian would
not have.
My years of experience as a pastor and my close friendships with Sunni Muslims and
members of the Nation of Islam in North America have taught me that the theological
perspectives of the “people of the Book” are wide and diverse—far from monolithic—when it
comes to issues of death and dying. The sacred texts of Christianity and Islam teach a great deal
about life after death; but the degree to which the average African American believer embraces
those beliefs varies from community to community and, almost, from believer to believer.
The gap between what is written in the sacred text and what is in an individual’s heart
and mind is the subject of revelation and history in the Christian Bible, both Old and New
Testaments.
27
My primary professor of Judaism at The University of Chicago Divinity School, Dr.
Jonathan Z. Smith, taught us our introductory courses to Old Testament and the History of Israel
in a very exciting and refreshing way. His methodology helps practicing Muslims and Christians
in the twenty-first century understand the difference between what is written in the sacred text
and what is lived in the everyday lives of the people of faith.
What the Bible shows us, for instance, is that in the Old Testament the sacred text teaches
(and preaches) ethical monotheism. The shema became the mantra of the Jewish faith and the
Christian faith: “Hear O Israel, the Lord our God is one God!”
The teaching of one God and one God alone became the foundation upon which the faith
of Israel, the faith of Judah, the faith of Judaism, the Christian faith (and many would say the
faith of Islam) were constructed. That there is only one God is understood as what the doctrine
of the faith teaches. What the people of faith practice, however, is something quite different.
In the Book of Genesis, for instance, Jacob (the grandson of Abraham) practices the faith
of monotheism. One of his wives (Rachel), however, steals the household idols of her father,
Laban, as she and Jacob leave Laban’s home to go back to Jacob’s home. His wife believed in
more than one God. She worshipped the gods whom the household idols represented.
In the Book of Judges, Gideon is cut from the same monotheistic cloth. When God calls
him into service and he accepts God’s call, the first thing he is instructed to do is to tear down
the male and female gods of fertility (Baal and Asherah) that are in his father’s backyard. His
father (also a practitioner of the monotheistic faith) worshipped the Canaanites gods of fertility in
addition to the God of Israel.
All throughout the books of prophecy, the prophets are railing against the practices of the
people of faith because they are worshipping several gods. They say with their mouths, “Hear O
28
Israel, the Lord our God is one Lord!” They recite their creeds of monotheism, but they practice
a faith of polytheism.
A cursory examination of the Book of Kings shows the same gap between preachment
and practice. The kings of Israel, starting with Jeroboam, set up false gods—idols and gods
made out of gold—and they ordered their citizens to worship those gods. The history of the
kings of Israel is one long list of kings who strayed away from the faith of David and who
worshipped gods other than Yahweh, Elohim or the God of the Covenant.
In addition to all of the problems that exacerbated these kinds of practices in New
Testament Christianity, there is still the twenty-first century practice of Christians professing
with their mouths an acceptance of Jesus Christ as their personal savior, which means that
everything in their lives has changed. Every Christian embraces II Corinthians 5:17, which says,
“If anyone is in Christ Jesus, they are a new creature, old things have passed away. Behold. All
things have become new.”
While professing this with their lips, however, the majority of twenty-first century
African American Christians can tell you what zodiac sign they are born under. Claiming that
they are Aries, Gemini, Virgo or Libra negates II Corinthians 5:17. They are saying that being
born under a certain sign in the zodiac gives them certain fixed characteristics that not even Jesus
Christ can change.
The sacred Scriptures of the Christian and the Muslim faiths—both the Bible and the
Quran—are full of passages that talk about life in Sheol, the soul going back to God from which
it came, life in the hereafter, the resurrection of the dead, and life in paradise or life in heaven.
Those are passages that give the “official party line” of what the Christian faith and the Muslin
29
faith say about death. When practicing Christians and Muslims, however, face death, it is a
different story altogether in terms of what many of them believe.
There is no monolithic black Christian or Muslim belief. The theological perspectives of
Christians and Muslims cover a wide spectrum of beliefs. When death comes knocking at a
believer’s door, everyone does not go as easily as the black women James Weldon Johnson and
Sterling Brown describe in their poems about death.
Many believing Muslims and Christians go kicking, fighting and screaming. Even Jesus
as he faced death quoted Psalm 22. He cried out in a loud voice: “My God! My God! Why hast
thou forsaken me?”
Jesus the human person had some problems with life’s greatest mystery, which is death,
and so do we. Having said that, I do not intend to put Jesus down or to put any believer down.
Human beings are human beings. We are both dust and divinity.
That means that we have fears and faith, doubts and assurances, and some questions for
which there are no answers. We have some anxiety in our belief system and our “doubts and
fears” are interspersed with hope and ultimate trust.
Hope and trust are not the only beliefs we have, and those are not the only set of
emotions that rush through believers’ hearts and send thoughts into their heads when they are
faced with death and dying. When we as believers have to watch our loved ones suffer and die,
the wide range of emotions that we experience, and the incredible rush of thoughts that flow and
fly through our heads are just as diverse.
As an historian of religions whose field of study was West African religions, I know the
carryovers from the African culture into the African American experience are incredible. They
are almost too numerous to mention. (See Henry Mitchell’s Black Belief.)
30
What African Americans believe about the living dead, the ancestors, life after our breath
has left our bodies, the presence of the spirits of the ancestors, and those whom we love who no
longer live among us in the flesh is an important part of the framework for understanding end-oflife care and death and dying in the African American community, in the African American faith
community and the theological worlds which make up Christianity and Islam in North America
among African Americans.
In West Africa libations are poured to the living ancestors, and it is to those same
ancestors that Jesus was talking when he ascended the Mount of Transfiguration with Peter,
James and John.
My approach, therefore, in talking about the theological perspectives on death and dying
from an African American perspective, is to hold in tandem what it is our members actually
believe when it comes to the lived experience as contrasted and compared with what the
doctrinal texts and axioms of our faith say we should believe.
The way John describes heaven in the Book of Revelation and the way the Quran
describes the virgins waiting in paradise for a Muslim man who has lived a good life are
eschatological descriptions and beliefs. What black Christians and Muslims believe “on the
ground,” however, does not always square with the written text or with the eschatology taught by
both faiths.
I give you this background to help you understand the difference between what it is
people say with their mouths as they embrace a faith and what it is they do in their daily
practices as they live out their faith. As this is the truth I have encountered among practicing
Christians in my 34 years of pastoral experience, I would suggest to you that the same is true
with Islam in West Africa and Islam in North America.
31
African traditional religions are not abandoned or forgotten when people embrace Islam
or Christianity in Nigeria, Ivory Coast, Senegal, Liberia, or Ghana. The beliefs about life after
death, death as a part of life, death as a “friend” and death as “the final enemy” are all found
among Africans on the continent and Africans living in the North American diaspora.
Practicing Christians of African descent in the Americas also find almost no difficulty in
mixing the Orisha of Yoruba and Christianity. In Cuba it is called Santeria and in Brazil it is
called Candomblé.
The African traditional religions, and, indeed, all of African culture, teach that the soul
lives on after death. They also teach that an individual’s spirit stays among its people while
traveling back and forth between the land of “the living dead” (Sheol) and the familiar places it
used to traffic in while it was in the flesh. Some of the practices of Africans living in the
diaspora in the Deep South and throughout the Americas demonstrate that these beliefs live.
Henry Mitchell in his book, Black Belief, gives dozens of examples of African practices
that are still extant among African Americans who live in North America. Many of the beliefs
have to do with death, dying, the preparation of the corpse, and the freeing of the spirit of the
deceased. Mirrors are still covered, for instance, in some places in the Deep South to keep the
spirit of the deceased person from being trapped in the house where he or she lived.
As a pastor I have had hundreds of members who have talked to me in my three decades
of ministry about visitations of their loved ones who have come to them following their deaths.
Sometimes the loved ones have talked to them. Sometimes they have simply let their presence
be felt. At other times they have sat down on the bed and the member who was sharing with me
could feel them actually sit on the bed, while at still other times the departed loved one was just
seen passing through the house.
32
This strong belief in life after death—not just in heaven or with God, but in the spirit
world—makes the playing field quite uneven when it comes to understanding the attitudes and
the theology which inform the belief systems of African Americans in the Christian and Islamic
communities in the United States of America.
Realizing that I run the risk of making broad, sweeping generalizations and lumping
widely disparate people together, let me try to give those of you who will minister to persons of
faith some general guidelines based on the experiences that I have as a pastor and as person.
There are some Christians of African descent who take the Bible literally. They believe
in bodily resurrection. They are adamantly opposed to cremation or to organ donation because
they believe that their physical bodies are going to be raised “on the day of Resurrection” and
they want those bodies intact.
These Christians look at I Corinthians 15 where Paul says “the dead in Christ shall rise”
and they completely ignore the fact that Paul has said that there is a spiritual body that will be
raised (and not a physical body). They discount the reality of the decomposition of the flesh and
they think that their physical bodies are going to be raised just as they were when they were
embalmed.
The Christian Scriptures teach that at death the body goes back into the ground from
whence it came and the spirit goes back to God from whence it came; but many African
American Christians lean over the casket to kiss their loved ones’ remains as if their loved ones
are still with them in that body.
They completely ignore what the Word of God says about that “house” that the soul lived
in. They think that “house” that they are looking at in the casket is the actual person and they
kiss that house goodbye as if they are really kissing their loved ones goodbye.
33
Other African American Christians understand completely the writings of Paul in a
different way. They see nothing wrong with cremation and they heartily endorse organ donation.
Some Black Christians understand terminal illness. They understand incurable cancer.
They understand HIV as a biological issue, not a theological one, and they realize that once they
get the virus their immune system has been compromised irreparably.
Those same Christians understand that once a person gets full-blown AIDS there is no
cure and the “house” in which their soul resides is going into the ground. They look at Paul’s
writings in II Corinthians 5 and understand that they have another building “eternal in the
Heavens” in which their soul will live.
The building in which their soul lives right now, however, is crumbling and will be
destroyed. I have found the same to be true with many Christians who understand inoperable
brain tumors, pancreatic cancer, liver cancer, and other terminal diseases in the same fashion.
Some Christians face death confidently because they know they have another building.
Other Christians who love the Lord just as much go kicking and screaming. Because they have
never experienced death they are afraid, and as a pastor I have had to reassure them of the fact
that fear is natural. Fear is normal. Fear is nothing to be ashamed of, but fear is not the final
answer.
Reminding Christians whose faith is strong and who embrace death confidently that God
is with them even at their dying hour is an easy task. Reminding Christians who are, however,
dying and afraid that the same God who has been with them in life is with them now in death is
not that easy. It is what we are required to do as believers and as ministers of a God who has
never made a promise that He has not kept.
34
I have had members ask me to explain to their families that death is not final. Death does
not have the final word. Those members have been told that they have an incurable disease
and/or a terminal disease, and they want to die with dignity. They want to enter hospice care so
that they can die in peace.
Their family members, however, who go to the same church, who pray to the same God,
who sing the same songs and who have heard the same Gospel refuse to hear what their loved
one is saying. They have whipped guilt trips on their loved one by saying, “If your faith was
strong, you wouldn’t give up like this!”
The televangelists—the Benny Hinns, the Fred Prices, and the “Word of Faith”
preachers—have had a tremendously negative impact on many African American Christians. I
call their impact “negative” because it makes Christians feel as if their faith is defective if they
get sick. It makes those same Christians think that something is wrong with them if they do not
just “have the faith” in a God who has the power “to cure all of their diseases.”
I have had members quoting, with no understanding whatsoever, Psalm 103 while dying
of liver cancer. They believe that God will heal all of their disease as Psalm 103 says, and they
take the words of that Psalm literally.
If God does not heal them, they reason, it means that their faith was not strong enough.
Their family members undergird that kind of distorted teaching, and it makes ministry very
difficult while trying to represent a God of love, a God of power, a God of hope and a God who
gave His Son that we might have everlasting life.
In addition, many of the families with whom I have done ministry across the years are in
different places when it comes to understanding hospice care, palliative care and end-of-life care,
which can make the final stages of a person’s earthly journey as pleasant and as joyful as it can
35
possibly be. Some families are open and receptive to what God does through the persons
working in those professions.
The families that are in denial, however, do not want to talk about palliative care.
Families who cling to false hope do not want to talk to hospice chaplains or hospice care people
because they think that to say yes to hospice care is giving up of life, giving up hope and/or
showing a lack of faith in God.
Once some church members are in hospice care, moreover, I have found them to be
afraid of OxyContin. They say they do not want to become drug addicts so they deny themselves
of the very medication that will ease the pain and suffering that they are experiencing.
In addition to my pastoral experience, my four years as a cardiopulmonary technician at
the Naval Hospital in Bethesda exposed me to many Christians and Muslims who were dying.
They knew what their sacred texts said, and some of them faced death triumphantly and joyfully.
Others however were afraid. Others were angry. Others were in disbelief and still others were in
denial.
What my combined experiences as a cardiopulmonary technician and as a pastor taught
me was not to prejudge any situation, any illness, any family or any individual. More than not
prejudging, however, my combined experiences taught me not to judge—at all.
Every person faces life’s greatest mystery on his or her own terms and in his or her own
way. There is no right way, and there is no “wrong way.” There is an individual’s way in which
he or she must find for themselves. Those of us who do ministry with people of faith have to
keep that in mind as we try to represent God, represent Christ, or represent Allah in that
individual’s life.
36
In addition, knowing the various stages of grief is very helpful when it comes to
ministering to the dying and their families. Knowing those stages helps the pastoral counselor to
understand better what stage it is that an individual is passing through as they withdraw from
their loved ones, as they express anger—whether free-floating anger or anger with God—and as
they express feelings of being lost in a world they do not understand.
Understanding how an individual can move in and out of the different stages of grief at
different times as they are dying is also important. It helps the pastoral counselor (whether
minister or imam) to be present with the dying believer in whatever stage they happen to be in on
any given day.
It has been my experience to do ministry with persons of strong faith who have shown
emotions that are at opposite ends of the “faith spectrum.” Their faith is strong that Jesus is
coming to get them just as He promised in John 14. Their faith that they have another building
waiting for them (the mansion that Jesus promised) and their faith that they will have everlasting
life is unwavering.
At the same time, however, when the physical pains of terminal illnesses such as cancer
hit them, the words that come out of their mouth make them sound more like Jesus on the cross
of Calvary than Stephen in the Book of Acts. I have heard strong saints asking God, “Why?”
I have heard them say, “But you promised me, Jesus!” They do not understand why the
contradiction. Their lives have been lives full of contradiction as African Americans living in a
culture of white supremacy. Then they get down to their dying moment, and they discover that
instead of pat answers there are even more contradictions through which they must die just as
there were contradictions through which they had to live.
37
Understanding that God is present even when God is silent is crucial for one who would
seek to do ministry with those who are dying and their families. Getting a dying person and his
or her family to understand that God is present even when they cannot feel God’s presence
becomes very important—especially if the wavering has carried the dying individual into a zone
where they are now questioning God as Jesus questioned Him while hanging on the cross of
Calvary.
Reassuring that individual that the answer to their questions and their fear is God’s very
presence then becomes one of the most important gifts that a minister or an imam can give to a
dying individual in his or her family. Quoting verses of the Quran and verses of Scripture that
remind the dying person and his or her grieving family that God is present and that God does
care even as they are leaving this life become important acts of ministry that will never be
forgotten.
Not praying “impossible prayers” or asking for God’s miraculous intervention to stop the
dying process are just as important in providing ministry as is the minister or imam’s presence in
the dying person’s life and in the dying person’s death room as they are leaving this life.
Staying there until the end as John stayed with Jesus and as those who loved Jesus stayed
with Him is also an important task for those who would call themselves doing ministry. A
person who is dying withdraws sometimes from their families and their loved ones. They pull
off into themselves and go to a place that the living cannot reach.
The minister or the imam who stays right there by their side, however, showing them and
their families that God’s promise is true and that Allah’s presence is constant will provide a
“ministry moment” that will never be forgotten by the family members of those who watch their
loved ones slip away.
38
Offering prayers of thanksgiving for the life and the labors of their loved ones and
offering prayers of thanksgiving for the victory given through Jesus Christ put an exclamation
point at the end of that person’s life that will never be forgotten by those who gather around the
remains of that loved one.
Reminding those who mourn of the words of faith found in the sacred texts becomes a
finishing touch on the masterpiece of mercy that is needed in the life of those who are asking
God to have mercy upon them as they are dying.
* * *
I hope that these reflections will empower those of you who attempt to do
ministry or to provide palliative care, hospice care, and end-of-life care with, to, and for
those who need you, God, or Allah the most as they end their physical lives. More
importantly, I hope that these reflections will remind you of God’s presence in your life
as you seek to be a presence in the lives of others.
39
REFERENCES
1.
Thurman H. The Negro Spiritual Speaks of Life and Death. Richmond, Ind:
Friends United Press; 1975.
2.
New English Bible. New York, NY: Oxford Press; 1976.
3.
Smith P. Facing Death: The Deep Calling to the Deep. Kearney, Neb: Morris
Publishing Co; 1998:37–39.
4.
Heard in conversation with Howard Thurman during a visit to his home in San
Francisco, Calif, 1975.
5.
Thurman H. Meditations of the Heart. Boston, Mass: Beacon Press; 1951:127.
6.
The name “Allah” is the Arabic word meaning “The God.” Both Muslims and
Arabic speaking Christians address God as Allah. The use of the masculine
pronoun for Allah is only for linguistic convenience and not to ascribe a gender to
Allah.
7.
“This day have I perfected your religion for you, and completed MY favor unto
you, and have chosen for you as religion AL-ISLAM.” The words of Allah, as
found in Qur’an 5:3.
8.
The Qur’an is the accumulated Revelations which Prophet Muhammad received
from Allah through Angel Gabriel. The word Qur’an means recitation.
9.
Many times in Qur’an when Allah is speaking, HE uses the first person plural:
“WE,” “US,” and “OUR.” In many other places, HE uses the usual “I,” “ME,”
40
and “MY.” Pronouns referring to the Creator are written in upper case letters.
10.
Wadud A. From QUR’AN and WOMAN. Oxford University Press; 1999:45.
11.
By calling it to witness, i.e., by speaking of the Day of Resurrection as if it had
already occurred, Allah is conveying the certainty of its coming.
12.
But those rewards will be outweighed “by their refusal to believe in resurrection
and the life to come.” Quoted from Asad, note 27, surah 11. The Message of the
Qur’an. The Book Foundation; 2003:354.
13.
Obligatory tax which is used for charity and know as “a loan to Allah.” See
reference 17.
14.
Qur’an 19:61.
15.
Salaat is one of the five pillars of Islam. The other four are declaration of faith
(shahaadah), obligatory tax used for charity (zakaah), fasting during Ramadan,
and pilgrimage to Mecca (at least once in a lifetime).
16.
If we worship anything other than Allah (whether it is idols, stars, powers of
nature, spirits or deified men, or self, or power, or wealth, science or art, talent or
intellect) our worship is both foolish and futile. From Y. Ali, note 1822.
17.
Isaiah 1:18.
18.
The Holy Qur’an 3:64. The phrase, “people of the Book,” refers to the people of
the three Abrahamic faiths: Jews, Christians, and Muslims.
41
19.
The Holy Qur’an 42:15. Cleary T, trans. Starlatch Press; 2004:239.
The attitude towards death, from the perspective of African American Christians,
is theologically rooted in the Bible. In my own book, Facing Death: The Deep
Calling to the Deep, I believe with Howard Thurman that death is not regarded as
life’s worse offering. I believe that if we live as though death is the worst thing
that can happen to us, we lose the zest for living. I still believe in the relevancy of
this, as African Americans weave a path through the corridors of death and dying.
Family and Psycho-Social Dimensions of Death and Dying for
American Americans
Joseph Dancy, Jr PhD, MDiv, ThM
Professor/Gerontologist
Ethelyn R. Strong School of Social Work
Norfolk State University
Norfolk, Virginia
And
Willie D. Davis, PhD
Co-Chair Health Issues Task Force
National Association of Black Social Workers
Lansing, Michigan
African Americans have been shaped by a unique cultural and historical experience in
America. That uniqueness also is reflected in the way African Americans confront and
cope with a universal reality—death. Death is an inevitable part of the life experience
that all families must face. African Americans’ social and psychological response to
death is resultant from several factors, among which are the special oppression they
experienced through slavery and subsequent racial discrimination as well as the imprint
of their African legacy. Religious and spiritual influences, too, play a central role in
shaping the African American family’s response to the changes and challenges that death
may bring. It has been through the reservoirs of strength and adaptation garnered from
religious, spiritual and cultural life that the African Americans have successfully
confronted and coped with the social and psychological challenges and changes that
death presents.
1
Family and Psycho-Social Dimensions of Death and Dying for African
Americans
INTRODUCTION
Regardless of our culture, all of us must eventually face at least two fundamental
issues. First, we face the realization that life is finite—we will not go on, at least in our
present form, forever. Second, the world has no built-in scheme that gives it meaning. It
is, at the moment of birth, a meaningless world. We must give our existence
meaning.1(p40) In addition, what defines death as an event may vary from culture to
culture. Although death is universal, cultures vary in how participants in a culture
conceptualize death—what will be done and how it will be done. Death is defined here
as the irreversible cessation of life. From an Afrocentric perspective this article will
address the psycho-social dimensions of death and dying in relation to the African
American family. The term “family” in this discussion is inclusive of the extended
family and church family.
DEATH AND DYING
Death is a subject of relevance to everyone. It is the one fact about the future that
can be counted on for certain.2(p441) Indeed, death is a universal, natural, persistent,
inescapable, unavoidable, and undeniable fact of life. Death’s impact on human behavior
does not take place in isolation; It takes place in a given social context. In other words, a
person’s behavior is a dynamic interaction between the person and the social context in
which he or she lives. The social context for this article is the United States, with
consideration given to a co-culture of this context—that of African Americans.
Family and Psycho-Social Dimensions of Death and Dying
2
Freeman states that there are four types of death, and each type has implications
both for the dying and for those left to grieve the loss.3 The first is social death, which
represents the symbolic death of the individual in the world he/she has known. For the
person dying and for the survivors, socially and interpersonally, the world as it was
known begins to shrink. A second type of death is psychological death. This refers to
the death of aspects of the dying individual’s personality. How dying persons move
through the grieving process and deal with their losses may bring about changes in the
person’s personality. Changes may also take place as a result of the disease process
and/or medications. Psychological death may precede biological and physiological death
and may be one of the several death losses the bereaved suffer. A third type of death is
biological death. With biological death, the organism as a human entity no longer exists.
For instance, biological death may be evident when a person suffers a heart attack severe
enough to damage the heart beyond repair, causing it to stop functioning. Although the
person is biologically dead, advances in medical science allow organs to be kept alive
and functioning by means of artificial life support. Physiological death takes place when
there is a cessation of the operation or function of all the vital organs.3 (p3ff)
CHANGING CULTURAL CONTEXT OF DEATH AND DYING OVER TIME
Culture is the total behavior, beliefs, and values of a group of people. Or to
define this term according to Brislin in its broadest sense, culture refers to the worldview,
values, norms, and behavior patterns shared by a group of individuals.4 Culture
profoundly impacts behavior and the family. It basically shapes how persons make
meaning out of illness, suffering, and dying.
3
When we fail to acknowledgement culture’s power, we may find it challenging to
care for, instruct, and learn from those with significantly different cultural experiences
from our own.
Culture is vital at all stages of life, so it is just as critical at life’s end. It provides
meaning to events, objects, and people. In death, we witness the end state of the physical
body. Yet,, what we believe about the meaning of death, how death should be faced and
what we believe happens after physical death varies according to our culture and its
associated religions.5
In our culture, dying, in the popular mind, is associated primarily with old age.
However, medical advances and increased life expectancy have demonstrated that old age
does not directly cause death. Nonetheless, it is increasingly the old who die, making
death predictable as a corollary of the aging process. The leading causes of death of
Americans 65 years of age and older are: 1) heart disease, 2) cancer, 3) cerebrovascular
disease (stroke), 4) lung diseases, 5) pneumonia and influenza, and 6) diabetes. The
association of dying of old age has caused death to be regarded as the completion of the
life cycle in old age.6 The process of dying and the prospect of death are universal
reminders of our mortality and vulnerability to physical decline.
In discussing culture, we must remember that the African worldview is the means
by which individuals interpret and act upon reality. The African worldview that African
Americans have handed down to their descendants, though greatly modified, still forms
to this day the underpinning of African American society.7 (p6)
4
ATTITUDES TOWARD DEATH
As indicated earlier, death is an inescapable, universal, and natural fact of life.
Yet, in our society, the fear of death brings an ongoing anxiety into daily living. We fear
the inability to predict what the future might bring and the process of dying, particularly
of a painful death, more than death itself. Studies show that older adults tend to select
quality of life in their end-of-life decision-making, while younger adults tend to choose
quantity of life. Older African Americans, however, are less likely to employ advanced
directives and more likely to want life-saving technology.6 cites some factors from
Robert J. Lifton’s work on the survivors of Hiroshima that clarify why there are greater
challenges within our modern cultural contexts in dealing with death. He offers the
following four points as reasons why the process of dying has become more removed and
distant within American culture:
1. Exclusion of the aged and dying. The movement to segregate the aged and
dying away from the general population into nursing or retirement homes causes their
societal exclusion. The exclusion factor creates fear of abandonment in the aged and
dying, making death even more ominous.
2. Advances in medical technology. Medical technology has hastened
individuals’ sense of control over their lives and death. These advances have also helped
increased life expectancy. Death becomes, then, less frequent as terminal illnesses
become chronic instead. Advances in medical technology have served to compromise
our ability to view death as a natural part of human life.
5
3. Movement toward the nuclear family. The movement toward smaller and
nuclear families leaves more individuals without extended family to reduce their
vulnerability and limited support following the death of a loved one. Modern American
society offers limited opportunities to experience the act of dying with aged relatives as a
natural part of the life cycle.
Howard Thurman noted that we are all participants in the modern conspiracy to
reduce immediate contact with death to zero except under the most extraordinary
circumstances. To many of us, death is gruesome and aesthetically distasteful as a
primary contact for our children and ourselves.8 (p18) In pre-industrial societies, the
majority of deaths took place in the home with the entire community often involved in
rituals surrounding the death. By the 1930s, the hospital had become the main setting for
death. Today, approximately 75 percent to 80 percent of all deaths occur in institutions
(hospitals and nursing homes), where aggressive treatment is common and with only a
few friends and relatives present.
Even though a number of persons express the preference to die at home and
without pain, the older a person is when he/she dies, the more likely that death will take
place in a nursing home setting. This leaves death removed from most individuals’ daily
lives. Though our sense of personal loss may be great, our primary relationship with
death is frequently impersonal and detached. We shrink from direct personal contact
with death.8 (pp18,19)
6
SOCIAL DIMENSIONS OF DEATH AND DYING
As indicated earlier, social death represents the symbolic death of the person in
the world they have known. The world the individual has known begins to contract
socially and interpersonally. Freeman states “the dying may experience social death as a
result of anticipatory grief by friends and or family. Separation of the dying individual
from others might result in magnification and preoccupation with the malady and
grieving for the losses to come.”3 (p3)
The AIDS epidemic provides numerous examples of social death. A young adult
male dying with AIDS in an African American family may experience social death as a
consequence of anticipatory grief by friends and family. Although dying may be viewed
primarily as a solitary event, the act of dying has wide implications within a dying
individual’s circle of relationships. The isolation produced by social death can be quite
painful for the young adult male dying with AIDS due to the societal stigma that has
often hastened the sense of alienation for AIDS patients. While families of AIDS
patients may have genuine concern about the health and welfare of these dying young
adults, family members’ experiences with death and dying under more “normal”
conditions may be quite limited. The limited exposure to death and dying hastens social
death for AIDS patients. Social death restricts the oxygen of relationships by removing
the dying individual from the comfort zone of familiar and positive social contacts. The
young adult male with AIDS, then, often loses the very conditions that might enhance his
health and well-being at a critical point.
7
Social death also has implications for the bereaved survivor. The caregiver for
the young adult male with AIDS may be a spouse, mother, friend, or partner. As his
condition worsens, increased demands are placed upon the caregiver.
Freeman observes that “the losses associated with social death may begin with
decreased contact with friends or organizations as they (caregivers) care for the dying
person.”3 (p3) Social death reminds us that few occurrences in life take place in isolation.
The physical act of dying produces social implications that impact the dying individual’s
circle of relationships and, sometimes, beyond.
PSYCHOLOGICAL DIMENSIONS OF DEATH AND DYING
Psychological death is the death of aspects of the dying person’s personality. This
type of death may occur due to a traumatic brain injury or stroke, a consequence of
medication or a disease process, or how the dying individual handles his/her grieving
process. “Psychological death leaves a person permanently psychologically altered or in
a vegetative state. The person, though alive, is not the person the bereaved have known
and loved.3 (p4) Norman Cousins may have had psychological death in mind when he
noted that “death is not the greatest loss in life. The greatest loss is what dies inside us
while we live.”9
AFRICAN AMERICAN APPROACH TO DEATH AND DYING
To give this discussion a historical perspective, Nancy Boyd-Franklin suggests
four main areas where the experience of African Americans in this country has been
unique from other ethnic groups10 (pp7–11): 1) African legacy, 2) the history of slavery, 3)
racism and discrimination, and 4) the victim system.
8
Consideration of African Americans’ African legacy incorporates such concepts
as family kinship and collective unity, the role of religion, and the African philosophy of
life.
In order to fully appreciate how African Americans understand death and dying,
some principles of African philosophy must be considered. Dr. John S. Mbiti points out
that “many words are used all over Africa concerning the act of dying. People refer to
dying as returning home, going away, being called away, becoming God’s property, and
so on. All these words show the belief that death is not a complete destruction of the
individual. Life goes on beyond the grave. Therefore, people combine their sorrow over
the death of someone with the belief that that is not the end and that the departed continue
to live in the hereafter.”11 (p119)
Dr. Mbiti also notes that individuals are quite sensitive to how things are done
when a death occurs in the family. As death indicates the physical separation of the
individual from other humans, death signals a dramatic change, so the funeral rites and
ceremonies serve to draw attention to this permanent separation. African customs
generally require that meticulous care be given to funeral rites to avoid undue offense to
the departed.11(p119) Psychologically, funerals in the African American co-culture have
come to represent a posthumous attempt to achieve dignity and esteem denied and limited
in a larger culture in which people often are treated with minimal respect. Thus, African
American funerals represent attempts to affirm the self and achieve some measure of
positive self-identity, if only posthumously.12 (p37)
Sullivan adds additional principles of African philosophy that provide relevant
background as to how African American families understand and experience death and
dying. Sullivan offers these related principles of African philosophy13:
9
1. The principle of dual unity serves as a core concept. With dual unity,
polarities are opposites. As examples, day and night, dead and living are viewed as
having reciprocal and unifying functions, rather than dichotomous ones. Dual unity
means that although death represents the soul leaving the body, death is still inherently
related to life, as opposed to representing the opposite of life. Death is a different
dimension of the same phenomenon.
2. The second principle is related to the first. This concept asserts that spirit and
matter cannot be separated. In traditional African philosophy the material world is seen
as a manifestation of the spiritual world. Thus, life and death—the spiritual and
material—are not dichotomous.
3. The family is also key to understanding African culture. Africans generally
include a larger circle of individuals in their family membership compared with families
of European origin. Traditional African societies include children, parents, grandparents,
uncles, aunts, brothers, sisters, and the offspring of these relatives. Departed relatives
remain in the family circle as the living dead. The living dead remain “alive” in the
memories of their surviving families.14 (pp138, 139), 13(p161)
According to African philosophy, an individual becomes conscious of his/her own
being and responsibilities towards self and others through connections to other persons.
In this sense, what happens to the individual happens to the entire group, and whatever
happens to the whole group happens to the individual. Mbiti points out that the
individual can only say, “I am, because we are; and since we are, therefore I am.”14(pp.138–
141)
10
For Sullivan the three stated principles weave throughout the African American
experience of death and dying with spirituality as a core facet to both life and death.13 A
core belief from African cultures that still influences and directs African Americans’
approach to death is that death is a continuation of life.15
DIVERSITY AMONG AFRICAN AMERICANS
Although cultural beliefs from Africa do influence and direct African Americans’
approach to death and dying, other factors also affect African Americans’ end-of-life
behaviors and rituals. The cultural diversity of society in the United States impacts
African Americans. In the United States, there are increasing contacts with new
immigrants, and co-cultures continue to grow in number.
There is also a great deal of cultural diversity within and between African
American communities due to social economic status, educational background, and
religious belief systems. Boyd-Franklin asserts that “given the heterogeneity of cultural
variables that are present in Black families and communities, it ought to be patently clear
that there is no such entity as the Black family. The great diversity of values,
characteristics and lifestyles that arises from such elements as geographic origins, level of
acculturation, socioeconomic status, education, religious background and age reveals
such categorization to be inaccurate. Black people in this country are not a monolithic
group.”10(p6) African Americans are a quite diverse group of people.16
The diversity of African Americans within the United States means that
contemporary approaches to death and dying among African Americans should examine
the influences of America’s cultural mélange.
11
R.K. Barrett points out that contemporary African American funeral rites and
practices reflect a fusion of traditional African and Western psychocultural influences.
West African influences, in particular, permeate the attitudes, beliefs and values that
African Americans reflect in their rituals for the dead. It should be noted that the
stronger the African American’s sense of cultural identity (positive sense of African
American consciousness), the greater the tendency to adopt traditional attitudes, beliefs,
and practices toward death and funeral rituals.17 (pp80, 81)
Not only religious and spiritual beliefs, but the dying person’s personality and
temperament, the primary caregiver’s personality and temperament, the family’s
resources, as well as other factors, will influence the manner in which African Americans
approach death and dying.15(pp148,149)
In summary, then, African Americans bring their unique perspective to issues of
death and dying. African Americans’ uniqueness has been shaped by their African
legacy, their ancestors’ slave experiences, their individual encounters with racism and
discrimination, and what Boyd-Franklin calls the victim system.10 Their perspectives are
a reflection and synthesis of the African and American aspects of their character
development.
THE AFRICAN AMERICAN FAMILY
“Call it a clan, call it a network, call it a tribe, call it a family. Whatever you call
it, whoever you are, you need one. You need one because you are human. You didn’t
come from nowhere.”18(p123) In this, Howard emphasizes the importance of the family
unit in our existence as humans. The African American family is an intimate connection
of individuals of African descent that are linked in a variety of ways.
12
These links may be through blood, marriage, formal adoption, informal adoption,
or by appropriation. However, the commonality of individuals in the African American
family, regardless of the type of ties to a family unit, is the history of common residence
in America with lineage traced to Africa and slavery.19 (p28)
The primacy African Americans give to the extended family versus the nuclear
family is a signal feature carried over from traditional African family patterns. Beyond
the nuclear family of parents and children, the extended family embraces grandparents,
aunts, uncles, cousins, nieces, nephews, and even more distant relatives, as well as some
friends and neighbors.14,19
In addition to espousing the importance of the extended family to the African
American family, some researchers of the African American family broaden the
definition of the African American family to include the concept of church family.
The inclusion of the concept of the church family recognizes that for a number of African
American families, a church that serves persons of African American ancestry functions
essentially as another extended family. Boyd-Franklin points out that after the family and
extended family, the church becomes the most common source of assistance for African
American people.10
In summary, extended family, friends, church members, neighbors, and fictive kin
constitute complementary sources of informal support for African Americans.20 (p439)
This extended network of family, extended family and church family can be considered
part of the African American family’s “African legacy.”10 As Mbiti emphasized, the
African American’s ideas of marriage and family life are firmly rooted in African
thinking.14
13
Researchers on the African American family have provided the consistent
reminder that although African Americans are a diverse people, they share a common
cultural heritage linked historically to African culture.
STRENGTHS OF AFRICAN AMERICAN FAMILIES
In his classic research on African American families,21 Robert Hill emphasized
that the large percentage of women and adolescents who, through the years have had to
work outside the home long before careers for women became more acceptable in
society, necessitated the extraordinary versatility in family roles in African American
families.10 Role versatility, as well as extraordinary perseverance and persistence during
difficult times, are strengths of African American families that succeed in spite of
challenging circumstances.
Langston Hughes’ poem, Mother to Son, captures the voice of an African
American mother’s struggles as she challenges her son to face life’s difficulties with
perseverance, persistence, and hard work—three strengths of African American families
that succeed in spite of economic and social obstacles. The African American mother in
Hughes’ well-known poem knew all too well that her life and her family’s lives had been
an uneven journey, but that life’s obstacles necessitated diligence and a steady, attentive
“hand to the plow of life.” As a fitting tribute to African American mothers and the
importance of their roles in African American families, Hughes’ poem echoes the
strength and dignity of African American women in providing resilience to African
American families and their communities:
14
Well, son, I’ll tell you:
Life for me ain’t been no crystal stair.
It’s had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor Bare.
But all the time
I’se been a-climbin’ on,
And reachin’ landin’s,
And turnin’ corners,
And sometimes goin’ in the dark
Where there ain’t been no light.
So boy, don’t you turn back.
Don’t you set down on the steps
‘Cause you finds it’s kinder hard.
Don’t you fall now--For I’se still goin’, honey,
I’se still climbin’
And life for me ain’t been no crystal stair.22
This poetic tribute is a fitting recognition that African American mothers have
been significant strengths to African American families and their communities.
Billingsley19 also notes that evaluating the strengths of African American families should
take into account each particular family’s “religion, education, money or property, jobs,
family ties, and other community-centered activities…[as] the chief ingredients of strong
family life.”23(p100)
15
Religion and spirituality are sources of strengths for African American families.
The influences of the African continent are evident through the important role of the
congregational minister, belief in the supernatural, audience participation during worship,
hand-clapping, the rhythms of songs, spirituals and funeral rites.23(pp112,113) Historically,
African Americans’ belief systems have played an important role in shaping attitudes,
values and beliefs. Sharon Hines Smith’s study24(p17) of end-of-life issues also indicated
that religious beliefs are important resources during critical periods, such as end-of-life
decisions for African American families.
Finally, Hill observed that five factors contributed to the stability, survival, and
progress of African American families.21 These factors are: 1) adaptability of family
roles, 2) strong kinship bonds, 3) strong work orientation, 4) strong religious orientation,
and 5) strong achievement orientation. Boyd-Franklin cautions that Hill’s five strength
factors should be viewed as inherent within African American culture.10(p16)
THE FLUIDITY OF ROLES
In the family life cycle, there are differences and similarities between African
American families and other majority and minority families. As has been stated earlier, a
unique factor of African American family life is fluidity of roles.
Even though the institution of slavery attempted to destroy kinship ties, slaves
adapted to this attack by broadening their kinship groups to include non-blood
relationships. The pattern of inclusion of pseudo-family members and other relatives in
varied family roles continues to this day among many African American families.25
16
When death claims a family member and creates a void in the family system,
fluidity of roles allows the African American family to reach equilibrium by enabling the
family to function, at least in the interim period of early bereavement. Hill pointed out
that when the roles in an African American family are flexible, the family appears more
likely to cope effectively with changes in circumstances.21
AFRICAN AMERICAN SPIRITUALITY AND RELIGION
Historically, religion and spirituality have played significant roles in the lives and
experiences of African Americans. Though the majority of African Americans may
adhere to a Christian belief system, this does not indicate that all persons of African
American ancestry regard death from a religious perspective. This latter point, again,
points to the diversity within African American communities.
Recognizing that religion has a quality of universality, that is, all peoples mark
the spiritual in some aspects, Mbiti has stated that for persons of color, “it is as if African
peoples do not know how to live without religion.”11(p194) Researchers who study African
American families have repeatedly pointed to the central role of religion in these families.
These families’ spiritual beliefs provide important coping and survival resources,
especially during critical end-of-life periods, and religion and spiritual beliefs offer
adaptive and supportive roles in enhancing the mental health and well-being of African
American adults.10,19,26,20,24
The unique and colorful character of the African American church derives from
the African American interpretation of the Western church. As with traditional West
African funeral rites, the African American church serves as the wellspring that feeds the
African American community its African-inspired religious rituals.17(p81)
17
When death occurs in the African American community, the African American
church generally serves as the central gathering place for bereaved families. It is not
uncommon to find the African American church providing comfort to families that have
experienced loss, though the deceased may have been “unchurched” or lacked regular
church attendance or membership. If the deceased person’s family members are
churchgoers, especially the parents, grandparents, or siblings, enough of a tie may remain
for the African American church to extend its collective fellowship and support to the
bereaved family. As Sullivan points out, African American churches are major
caretakers by serving as both a community and spiritual family.13
The importance of religion and the spirit in African American families permeates
daily conversations in homes. In child rearing, a parent might be heard to say, “Just
‘cause folks do bad to you don’t mean God wants you to do bad to them!”21
What is seen of death is the finality of the physical body. But what is believed
about the meaning of death, how it should be faced, and what happens after physical
death varies by culture and beliefs.
Though Christianity was seen by slaveholders primarily as a vehicle to control
slave behavior and to keep slaves submissive, slaves adapted and reinterpreted
Christianity and its music to aid in coping with the vicissitudes of their distressing
conditions. The reinterpretation brought forth numerous Negro spirituals.27
African Americans’ inherent spirituality throughout life and death can be
evidenced in the music and lyrics of slave songs. The late theologian, Howard Thurman,
who was also a philosopher, mystic and spiritual mentor, provided his insights about
African American spirituality as expressed through music in his work, The Negro
Spiritual Speaks of Life and Death.
18
Thurman “examines the Negro spirituals as a source of rich testimony concerning
life and death, of a people for whom the cup of suffering overflowed in haunting
overtones of majesty, beauty and power.8(p12)
Thurman suggests that Negro spirituals spring from three sources: the world of
nature, the African American experience, and the Bible.8 The reality of death, as
expressed through song, occurs within a particularized context. The slave was regarded
as chattel property, a tool, a commodity, but not a person. Death always loomed as an
ever-present threat. Thurman poignantly writes that “he (the slave) was faced constantly
with the imminent threat of death, of which the terrible overseer was the symbol. If a
slave were killed, it was a property loss, a matter of bookkeeping.”8(p14) The situational
context of the slave robbed death of any dignity, with the attitude toward death
profoundly influenced by life’s experiences.
African Americans as slaves cause these questions to be raised: What were the
slaves’ attitudes toward death? How important was death in their thinking? Was death
viewed as the worst of all possible things that can happen to a person? Thurman offers
his response to the African American slaves’ attitudes and response to death in this
familiar spiritual refrain:
Oh, Freedom! Oh, Freedom!
Oh, Freedom, I love thee!
And before I’ll be a slave,
I’ll be buried in my grave,
And go home to my Lord and be free.8
19
Of course there are additional spirituals that also reflect the message from the
slave song above. The point here is that death was not viewed as the worst thing that can
happen to an individual. As the slave song suggests, death would be preferred over
slavery because, at least, through death, the captive slave would know freedom. For
African Americans, there are some things in life that are worse than death.8(p15) The
historical refrains provided by some African American spirituals inform us that death and
dying have loomed heavily in the African American consciousness since the earliest days
of Africans on North American shores. The slave songs provide an important window
into African American spirituality and beliefs about death and dying.
THE FAMILY TASKS OF GRIEF
A family’s cultural roots can deeply impact family members because each family
member is part of a family system. Families are systems because of the linkage of the
various family members.16(p35) The African American family unit is a dynamic and
interactional system. Though death and dying are natural and universal, these events
often occur as solitary events within the family unit. Death brings a profound impact on
the family unit that can result in disequilibrium and adversity that reduce the family’s
proper functioning. Researchers on the family have repeatedly indicated that the death of
a family member is one of the most powerful emotional upheavals that families ever
face.3 How each family responds to death in the family will, of course, vary. The range
can be from non-adaptation to extraordinary resilience.
Freeman summarizes the task model of family grief that closely follows that of
Worden and Moos. Families’ grief work is an extension of individual grief work. The
five tasks of family grief are as follows3:
20
1. The first task of family grief is the need for family members to openly
acknowledge the death at both cognitive and emotional levels. This requires
communication and conversation about the deceased, as well as family members, sharing
feelings about the death and surrounding events.
2. The second task of family grief is to allow mourning to occur. The pain of
mourning necessitates that family members cooperate in aiding other family members in
the grieving process.
3. The third task of family grief, according to Freeman, is the process of
adjusting to an environment in which the deceased is missing. The deceased remains in
the family’s consciousness, though the family must now adapt to life without the
deceased.
4. The fourth task of family grief is the realignment of intrafamily roles.
Responsibilities have to be redistributed and roles readjusted with the family unit. Role
adjustment faces each family member at some level.
5. The fifth task of family grief is the realignment of extrafamily roles. Family
members now face the task for establishing new types of relationships with old
acquaintances and making new acquaintances without the deceased family member’s
presence or input.3(p145)
21
CONCLUSION
As said previously, death is a universal, natural, and inescapable fact of life.
Regardless of our culture, every individual must face the fact that life is finite: We will
not go on in our earthly form forever. The loss of a family member can be a devastating
emotional experience for a family to face. This discussion addressed the psycho-social
dimensions of death and dying in relation to the African American family. Consideration
in this discussion was given to the changing cultural context of death and dying over
time, the psycho-social dimensions of death and dying and the African American
perspective on death and dying. Death in the African American community can be
viewed as a celebration of life and as a statement of the fact that life’s journey has been
completed.
22
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Family and Psycho-Social Dimensions of Death and Dying for African Americans
Commentary by Andrea King Collier
Now I lay me down to sleep, I pray the Lord my soul to keep. If I should die before I
wake, I pray the Lord my soul to take.
This was one of the first prayers I was taught as a child. Is it any wonder that I
am not an insomniac to this day? Or for that matter I think it explains why so many of us
wrestle with the mere concept of death and dying. But funny, as I have gotten decades
older and seen various people I love and respect die in a host of ways, it is now a prayer
of comfort. I like the idea of going to sleep one day, like any other day, and not waking
up. No long disabling illness, no chemo. No pre-planning, no big decisions to be made
on my behalf. No one needs be a hero. No pain or palliative care required—just a good
long sleep.
But the reality is that as many people as there are on this earth, there are as many
ways and stories about the way we die. As I heard Richard Payne, MD, say in a speech
once, “The single biggest indicator of mortality is being born.” He’s right. We all leave
here. And no matter how we try to prolong it, the result is the inevitable, so it is best to
live well and to love well.
Growing up, I never had much experience with death. My grandmother and
caregiver was a volunteer at the church. Her job was to read the obituaries at the funeral
services. She would take me with her, and I would sit quietly in the back of the church,
listening and critiquing her delivery and watching the families.
2
For a long time I didn’t really understand that there was finality to this death stuff.
And when I grew old enough to understand, I was still quite removed from it.
My personal reality is that I was in my late twenties before death personally touched me
in any way. Or maybe the truth is I ran from death’s touch until absolutely necessary.
I am one of the people that sociologists call the sandwich generation. I was
sandwiched between the care of two small children and the care of a terminally ill parent.
The sandwich was a thin one, as I had no skills or training to deal with this. The ongoing
sense of inadequacy in wondering if I was just failing everyone or doing a passable job
for anyone seemed to overwhelm me.
Once we got further and further into my mother’s advancing disease, my own
prayer was that she wouldn’t ask me to help her end her suffering. And every day that
advanced without that request was a good one. I look back on that time and wonder
where was the handbook that everyone should get to explain the end of life. I wonder
who thought that I was smart enough or capable enough to be the sole caregiver for
someone at the end of their life. It is still one of my life’s mysteries.
As is suggested by Dancy and Davis, it has always appeared to me that black folk
are miraculous with the rituals of homegoing. We know how to send a person off. We
also know how to stretch the time between death and the funeral out for days, often
weeks, until our relatives can come from across country to say goodbye (which has
always puzzled and dismayed me). Yet we are not so good at dealing with illness and the
transition itself. We struggle with cancer, Alzheimer’s, and stroke. Every day we are
learning more about and getting better at utilizing the community and familial support
that is required to care for those with life-threatening illness.
Commentary on Family and Psycho-Social Dimensions of Death and Dying
3
Even though it is getting better every day, it is hard work. These kinds of
illnesses either bring about the best in families or it picks away at the frayed, fragile
edges in them.
When my mother called me to tell me that the doctors thought she had some kind
of cancer, I knew in my bones, in my DNA, that what we were embarking on was the end
of her life and the end my life as her daughter. When I think about that time, even now a
decade later, I picture her and me on a rollercoaster and immediately think that we should
get off. But of course, you cannot. You must ride until the rollercoaster stops.
We were fortunate, blessed, or both. My mother had great health insurance. She
had me as her relentless health care advocate who never took no for an answer. She had
the best doctors. And I had the luxury at the time of being her caregiver. I understand
that our situation was not typical for many families of color. Nor did it affect the ultimate
outcome of my mother’s diagnosis of ovarian cancer.
That was 13 years ago, and in some ways not much has changed. There are more
resources, but it feels like so few people of color know about them. And those who do
know about them have a nagging distrust of “the system” that provide those resources.
When we were offered hospice care, I didn’t know anybody who had ever utilized it.
There was no one to give me an idea of what to expect. It was a grand, uncomfortable
experiment.
But for our family hospice was absolutely a godsend. It made her transition easier
for us. Hospice helped me understand death and dying better. And it gave me the
support that helped to make up for the missing handbook. But I also know that there are
many people of color who are not using hospice.
4
In the black community, we are opening ourselves up to the supports available at
the end of life. We are learning more about living wills and advance directives. We are
watching to see how this country speaks to those who cannot speak for themselves. We
are learning from what experts as Drs. Dancy and Davis have to say about culture and
death. We are benefiting from what experts are teaching our community about caring for
those who are transitioning.
In the two years since my book, Still With Me… A Daughter’s Journey of Love
and Loss, was published, I have gotten a chance to talk to hundreds of individuals and
families about living and dying well. I have heard the most touching stories of caregivers
and families navigating care. I have seen the look of helplessness when there is just so
little help available. I have seen what a heart breaking looks like and have felt my own
heart breaking because I couldn’t do more.
I used to say that I am the angel of death, because I have spent so much time
talking about my family’s death experience and how we reached out for hospice support.
A friend who sought out support in her community because of our experience always
corrects me. She says I am one of the angels of good death. This is something I do not
take lightly. For me it means that I can reach out and inform and share with others who
are desperate or nearly at the end of their ropes in the need for quality pain and palliative
care.
If there is any take-away message in the work of Dancy and Davis, or in my own
book, I suggest that it is that we must make a priority of understanding the processes of
dying as well as we work to understand the processes of living.
5
As Black Americans, we must continue to grow to support each other as
individuals, families, and communities in the full-circle business of living and dying with
dignity.
Andrea King Collier is a freelance journalist. Her book, Still With Me… A
Daughter’s Journey of Love and Loss, was published in 2003. Her new book,
Because We Love You…Black Men’s Health for Black Women, is coming soon
from Warner Books.
Working Together: Organizing the Community to Effect Change in End-of-Life
Care for African Americans
Community: A group of people living in the same locality and/or having common
interests.
Introduction
It is the common interests of communities, whether it be education, economics, safety, or
the health and well-being of a community that drives organizations, associations or faithbased groups to support and speak out for those who may not be able to speak for
themselves or who often times are simply not heard—underrepresented and underserved
communities, including the African American community.
These organizations and associations may offer opportunities for health care providers to
develop and nurture networking relationships and partnerships to work together for the
betterment of underserved communities. As with any social movement that has longevity
and reach within communities of color, it has been vital to build strong bridges and
partnerships with grassroots organizations, community-based coalitions and of course,
the religious community. The movement to provide access to quality end-of-life care to
the unserved and underserved African American communities around this country is no
exception.
In this segment, we will address the lessons learned to date about working with the
African American community to increase awareness of and access to end-of-life care.
The authors of this manuscript will highlight three innovative and successful communitybased initiatives designed to promote better care for African Americans. They are:
VITAS Innovative Hospice Care, a national organization that provides direct hospice
services; Trinity United Church of Christ, a large church congregation in Chicago that
ultimately partnered with VITAS to begin the work of providing direct hospice care
services in their congregation and community; and the Center for Practical Bioethics
(formerly Midwest Bioethics Center) which is working with members of local hospital
ethics committees to address end-of-life care of the communities it serves.
This paper will illustrate the type of creative partnerships and dialogues that are
happening in communities of color around the important health issue of end-of-life care.
While the work of these three organizations is helping to set the standards for outreach
within communities of color, they by no means stand alone. With significant support
from local and national foundations, more than 300 community coalitions around the
country have worked to:
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Improve pain management
Promote advance care planning
Support palliative care education for physicians, nurses, and social workers
Advocate for better psycho-social and spiritual support
Increase utilization of hospice care
The Challenges of Progress
Even with the numbers of community groups working to make inroads serving people of
color, hospice remains underutilized across all segments of the population. Like almost
every aspect of health care access and utilization, statistics indicate a disproportionate
underutilization of hospice care among minority populations. All of the authors
represented here have learned that there are nuances in working in the community around
issues of health and death. Before a health care provider can work in outreach to external
groups in various communities, there are internal matters to consider. Because there may
be complexities in caring for culturally diverse patients, it is important when caring for
communities of color that there is an understanding of their cultural values and spiritual
beliefs. To gain knowledge about these communities of color, there has to be a genuine
interest in these communities and a willingness to engage them. There has to be an
assurance that providers and organizations are truly committed to outreach efforts. For
example, they may want to consider implementing the following.
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Developing a formal diversity infrastructure within the organization that will
focus on these communities
Incorporating diversity training for all staff, including management, which will
focus on the beliefs and cultural traditions of the communities identified for
service Once this is established, then it may be time to look at reaching out to the
community. Consider:
Researching and identifying the community groups in the area
Establishing a trusting and mutually respectfully relationship
Hosting focus groups regarding end-of-life care issues with local churches and
various community leaders
Identifying local leaders with good standing that will advocate for communities of
color
Developing an action plan as to how and to whom to implement outreach efforts
Developing and building relationships with community agencies that may have
particular focuses on end-of-life care
Building ongoing and sustainable relationships within communities once they
have been established.
One essential way to reach the community at large is through the support and assistance
of the black church and other religious institutions or faith-based organizations. African
Americans have a spiritual heritage that is deeply rooted in community worship. Given
that the key to working with the churches is through their leadership, it is important to
bring clergy and various community leaders together. It is imperative to work with them
to form collaborative partnerships so that communities can be educated and thereby
empowered to better understand and make informed decisions regarding available end-oflife care services. There is tremendous potential and opportunity to work within
communities to increase awareness and utilization of hospice services and, most
importantly, to help affect positive change in end-of-life care for African Americans.
AN EXEMPLARY TRIAD OF COMMUNITY ACTION
VITAS Innovative Hospice Care: A Company’s Commitment
Sharon R. Latson
Senior Director of Access Initiatives
Diane Deese
Director of Community Affairs
Headquartered in Miami, Florida, VITAS (pronounced VEE-tahs) operates 40 hospice
programs in 15 states (Arizona, California, Connecticut, Delaware, Florida, Georgia,
Illinois, Kansas, Missouri, New Jersey, Ohio, Pennsylvania, Texas, Virginia, and
Wisconsin) and the District of Columbia. VITAS is the largest hospice organization in
the United States . The company is fully committed to improving care for the seriously ill
and dying throughout the nation. VITAS has always been aware, however, that there is a
huge divide between the percentages of white and non-white patients receiving hospice
care. In 2004, more than 1 million people utilized hospice services, yet only 8.1 percent
were African American.
Looking at those statistics and knowing what percentage of families could and should
receive hospice services; VITAS set an ambitious goal to increase the overall utilization
of hospice services by African Americans. To accomplish this goal, VITAS made a firm
commitment to reach out to underserved populations through its community-focused
Access Initiative. Since 2001, VITAS has worked tirelessly with key grassroots
organizations across the country, as well as with various high-profile national
organizations, to develop programs and establish relationships that will help to educate
individuals, families and larger networks of people of color to the benefits and services
that hospice care provides to patients and their families.
The VITAS Team
None of this happens without the commitment of individuals. VITAS first set out to build
a team that would work with and within the communities it hopes to serve. The VITAS
Senior Director of Access Initiatives manages and directs the VITAS Access Initiative
and is responsible for the development and growth of national initiatives to expand
awareness of and access to VITAS services in underserved and unserved communities of
color. The Senior Director also serves as a national spokesperson for VITAS on access
initiatives in both national media relations and public policy activities. A vital role of the
Senior Director of Access Initiatives is to work with the VITAS
communications/marketing department to develop and create culturally relevant
educational presentations and resource materials that complement and reflect the diverse
communities VITAS services. Finally, the Senior Director partners with all 40 of the
local VITAS programs to lead strategic development of local access initiatives.
The VITAS Director of Community Affairs works closely with all VITAS programs to
provide guidance, support, and continuing development and expansion of the Access
Initiative. Additionally, the Director of Community Affairs works to establish and build
on-going partnerships with professional organizations, community agencies, the political
community and healthcare organizations within communities across the country.
In summary, the goal of the Director of Community Affairs is to provide guidance in
promoting the hospice philosophy as well as to increase access to and utilization of
hospice services within the African American community and other underserved
communities
To access and serve diverse communities, VITAS, in several key states (Illinois, Ohio,
California, Florida, and Georgia ) where a large African American population and
community is established, instituted the position of community liaison. The liaison’s role
and responsibility is to reach out to local churches, community organizations, political
and community leaders, and community-based physicians to offer educational workshops
and informational seminars. These liaisons are vested in the communities they serve, and
they establish and maintain ongoing, trusted relationships within these communities.
By working together with community partners, VITAS has been able to reach out to
communities in broad and sustainable ways. Some of the noteworthy successes:
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Established relationships with African American radio talk shows, which led to
the airing of informational spots and discussions on end-of-life care issues with
show hosts and listening audiences
Placed feature stories and periodic informational pieces in African American
publications throughout the regions VITAS serves
Conducted memorial services at hospitals, nursing homes, in-patient hospice
facilities, community centers, and churches for family members to pay homage to
their deceased loved ones
Provided ongoing hospice educational seminars and workshops at hospitals,
medical centers, and nursing homes for the professional staff
Established key and long term relationships with renowned national African
American organizations and institutions
Conducted end-of-life care seminars and workshops at national African American
health care conferences
Worked in partnership with churches to provide an array of supportive services to
the ministries, which has helped bring awareness to the congregation members on
matters related to end-of-life care
In addition, as a very important part of its work to increase awareness and to build
partnerships, VITAS appointed a Director of Hospice Education for Rainbow/PUSH to
help inspire and educate the leadership of the One Thousand Churches Connected
initiative regarding the benefits of hospice care. Additionally, the Director of Hospice
Education for Rainbow/PUSH is responsible for introducing the VITAS Hospice
Ministry Program, which provides education on end-of-life care to the clergy and church
leadership as a whole, and also provides various spiritual care volunteer initiatives to
black church congregations across the country.
The Director of Hospice Education spearheaded several community-focused programs
under the Access Initiative and in collaboration with the Duke Institute on Care at the
End of Life. Under the hospice education directorship, the Black Church Community
Assessment Tool was created to evaluate the knowledge and attitudes of church leaders
and other key community leaders in the African American community with respect to
end-of-life needs; the survey assesses the knowledge and attitudes of members of the
African American community. The information is used to inform policy agenda and to
redefine educational programs and curricula for health care professionals providing care
and services to African American patients and their families.
The Samuel Dewitt Proctor annual conference brings together African American clergy
leaders and lay persons to strengthen networks within the African American faith
community and the capacity of its leaders to address the diverse needs of the community
it serves. The conference initiates and develops collaborative partnerships that maximize
the skills, assets, and models of engagement of the black church and its outreach into the
communities locally, nationally and globally. The conference is also a conduit to identify
and disseminate critical information between its partner churches and lay leaders locally,
nationally and globally.
In 2005 the leadership of the Samuel Dewitt Proctor conference, the Access leadership
team from VITAS, Duke Institute on Care at the End of Life, and the Duke Divinity
Office of Black Church Studies developed the Proctor Covenant Statement on End-ofLife Care. The covenant serves as an initial pledge signed by faith leaders from across the
country to support initiatives to improve end-of-life care in the black church. The Proctor
Covenant Statement will be finalized at a future time as a theological statement on quality
care at the end of life and will become the defining statement, standard and guide for
African American clergy. One of the more significant and successful VITAS partnerships
developed under the Access Initiative to date is with the Trinity United Church of Christ,
which is presented in the next segment.
AMANI - The Story of One Faith-Based Initiative Rooted in the Community
Rosalyn Priester
Director, Amani Care Program
Trinity United Church of Christ (Trinity UCC) is a mega-church serving African
Americans on the Southside of Chicago, Ill. Under the dynamic, 34-year-long leadership
of the Rev. Dr. Jeremiah A. Wright, Jr., Senior Pastor, Trinity UCC has moved in the
progressive mission of being an African-centered church which is “Unashamedly Black
and Unapologetically Christian.” Trinity UCC is “In the heart of the community . ever
seeking to win the community’s heart.”
More than 20 years ago, one very important part of Pastor Wright’s vision for Trinity
UCC was that the church would provide hospice care. Earlier attempts to establish
hospice care had been made but had not come to fruition. In 1998, Pastor Wright called
on a group of three members to again investigate hospice for the church. That group
became a task force whose efforts resulted in a three-stage growth plan for hospice
ministry at Trinity UCC. The task force members were Ms. Freddye Smith, Deacon
Francis Priester, and Deacon Rosalyn Priester.
Stage One
Our hospice task force wondered aloud why our pastor had chosen us, since none of us
were in the health care field nor knew what hospice was. We came to understand much
later in the process that he had chosen us because he had seen us providing what
amounted to hospice care for one of our beloved deacons before his death. Between us,
we provided spiritual care; attention to and advocacy for his physical needs;
connectedness to his church community, even when he became too ill to attend services;
attention to his financial and legal concerns; and ministry of presence and the love, care
and affection of an extended family in the absence of his own. We were to learn that
these were the fundamental tenets of hospice: that no one dies in pain and that no one
dies alone. We also knew that within the African American community, extended family
care and nurturing has always been at the heart of who we are as a people—communal.
Connecting this way of “being” to the concept of hospice and end-of-life care, however,
had not been done.
As the task force became educated about the end-of-life journey and the specifics of the
concept of hospice over the course of the next two years, we sought to better understand
our connectedness to our African heritage around death and dying. We enlisted the
assistance of the Rev. Dr. Iva E. Carruthers, a brilliant sociologist and member of Trinity
UCC. Dr. Carruthers researched and consulted with a fellow theology student from
Kenya who introduced us to the African concept of “Amani,” a Ki-Swahili word which
means “healing, wholeness and peace (at oneness—atonement) with God.” What was
most important to our understanding was that healing, wholeness, and peace is not just
for the passage of death into eternal life, but the healing, wholeness, and peace is for the
fullness of our life’s journey , of which death is only one chapter. Therefore, the meaning
of Amani spans both life and death. It was this understanding that led Trinity UCC to
rename our health corporation Amani~Trinity United Community Health Corporation,
and our task force became Amani Trinity United Church of Christ Hospice Task Force.
After the Amani Trinity UCC Hospice Task Force had explored which direction to take
for hospice care to become a reality at Trinity UCC, Pastor Wright determined that we
would not succeed in moving forward without a staff person dedicated to this effort. In
mid-2001, at Pastor Wright’s request, I joined the Trinity UCC staff, first as Coordinator
of Hospice Care and later as Director of the Amani Care Program.
Culminating this first formative stage was the commencement of hospice ministry work
under the title of the Amani Care Program. In 2002, we began a two-fold approach to
educate the community about end-of-life care and hospice while forming and training a
cadre of hospice care volunteers.
To accomplish this, we held educational forums at Trinity UCC and at other churches
entitled: End-of-Life - A Sacred Journey . Members of our congregation as well as the
community were invited. At these forums we featured guest presenters from various
hospices in and around Chicago to answer the questions “what is hospice,” “how and
when do I use it,” and “who pays for hospice care?” Most importantly, each of our
forums began with a pastor setting the tone of our African history and heritage, our
African-centeredness as a people of God, and our Christian beliefs about death and dying.
Since we know that we are all living in a death-denying society, it was important to “go
there” in the beginning so as to open a safe space to talk about death and dying. As
African Americans in this Christian body, we believe that there is eternal life after death.
In our African American community of faith, a death is celebrated as a home going. That
still does not, however, mean it is easy to talk about preparing for the death of a loved
one or for one’s own death. These forums became a safe place for and a way of opening
the conversation about death and dying, a sacred journey.
Concurrent to the hosting of educational forums, the Amani Care Program began training
volunteers for hospice care. Since we were not a hospice, we went to the experts, the
“full” Medicare hospices, to be trained. Thus, we benefited from the same presentation of
the hospice concept as that received by those being trained to be actual hospice workers.
Our plan was to expose our trainees to the full concept of hospice so that when the day
came that Trinity UCC had its own program, we would not have missed a step. To date,
we have trained more than 90 hospice care volunteers.
Stage Two
We wanted to become licensed to provide hospice care for our church and community.
So we next set out to accomplish this goal. Throughout 2002-2004 we continued hosting
our educational forums on end-of-life care and training volunteers. We also added
educational forums on advance directives. Early on, Amani Care Program became
familiar with the “Five Wishes Ò,” a living will publication of Aging with Dignity, and
we ordered customized copies for our forum attendees and anyone we could interest in
advance directives. We continue to provide these copies upon request from within our
church and the larger community.
From our earliest days as a task force, we had heard about volunteer hospices as a
category different from full (Medicare) hospices. Our first entrees into pursuing this type
of hospice were, at best, discouraging. We were told that volunteer hospices were a thing
of the past—that they had once existed, and were, in fact, the primary model of hospice
care when it originated in this country in the 1970s but now were illegal. Then, by an act
of grace, we saw an article in a hospice publication referencing volunteer hospices in
various parts of the United States, and one of them—Fox Valley Hospice—was
geographically close in Geneva, Ill. This hospice and their executive director and staff
became our mentor. While it is true that there are now very few volunteer hospices still in
existence around the country, Fox Valley Hospice stands out with a 25-year-plus history
of providing hospice care. They have more than 800 volunteers and are still growing.
With their mentorship and support, we worked diligently with the Illinois Department of
Public Health division that licenses all hospices. We were successful in forming our
advisory board, identifying and hiring the necessary staff (registered nurse, licensed
clinical social worker, and spiritual/bereavement care credentialed counselor), and
meeting all other requirements. We were proudly licensed as a volunteer hospice in July
2004 with the name Amani Volunteer Hospice Care Program. For the next eighteen
months, we were embattled in a fight to keep the category of “volunteer hospice” as part
of the Illinois regulations. In the end, our coalition of six volunteer hospices of Illinois,
led by Fox Valley Hospice, was successful in our legislative efforts. However, the page
was turning for the Amani Volunteer Hospice Care Program as we were moving on to
stage three.
Stage Three
Our pastor had always desired that Trinity UCC be able to provide full hospice service.
We explored that possibility and in the first quarter of 2006, we entered into a new
initiative agreement with VITAS Innovative Hospice Care Ò . This joint initiative is the
Trinity Amani Hospice Care Team with VITAS. We offer members of the African
American community and other communities of Greater Chicago end-of-life care that is
enriched with spiritual healing, wholeness, peace and dignity. These enhanced services
are available through the partnership of VITAS’ provision of individualized, patientcentered, quality hospice care, combined with Trinity/Amani’s ability to enrich that care
through a greater emphasis on cultural and spiritual integrity, sensitivity, and compassion.
This is a brand new model of a faith-based entity partnering with a for-profit hospice to
provide full hospice care. As of this writing, while the “Trinity Amani Hospice Care
Team with VITAS” team is not yet fully formed, we are moving steadily in that direction.
We presently have two Trinity UCC positions providing volunteer, bereavement and
education/advocacy services, and the remainder of the hospice circle of care (registered
nurses, certified nurse assistants, social worker, chaplain, physician, and team manager)
is supplied from an existing team of VITAS’ Chicago Central Office. The goal of this
initiative is for Trinity UCC to be able to provide the full range of hospice services to
members of our congregation and the surrounding community, and for the VITAS
Chicago Central Office to learn firsthand from an African American church how to better
approach, work within, help to educate and service the African American community in
the area of end-of-life care.
Trinity UCC is working faithfully in this relationship to see how we can together serve
our congregants and community who either know little about hospice and/or who
presently underutilize hospice services. To accomplish this will achieve our ultimate goal
by putting in place the basic tenets of hospice—that no one die in pain and that no one die
alone.
The Center for Practical BIOETHICS: Learning From Different Cultures
Myra Christopher
President and Chief Executive Office
Center for Practical Bioethics
Greater Kansas City is a metropolitan area of diverse racial and ethnic groups, and
although “cultural diversity” has been one of the Center for Practical Bioethics (formerly
Midwest Bioethics Center) organizational goals for many years, it was within the context
of a three-year initiative, Pathways to Improved End-of-Life Care: A Community’s
Approach , in the late 1990s, that we began working with diverse segments of our
community in a strategic way. In this paper, we will describe three projects that
specifically targeted African American populations among other diverse co-communities
in the Kansas City metropolitan area in an effort to improve end-of-life care for all
Kansas Citians:
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“Compassion Sabbath”—an initiative to provide support and training for clergy to
improve spiritual care of the dying.
“Trusting Our Differences”—an active listening project where members of our
hospital ethics committee consortium learned about end-of-life experiences from
African American, Latino, Vietnamese, and poor whites.
“EPEC” (Education for Physicians on End-of-Life Care)—a training program for
health care professionals caring for people of color at the end of life.
We will also share with readers what we, as a predominantly white staff, learned from
our interactions with African Americans in these three projects that not only strengthened
our Pathways initiative but also the overall work of the Center.
Compassion Sabbath
Various studies inform us that, at the end of life, having one’s spiritual needs addressed is
as important as having our physical needs addressed through competent clinical care.
Therefore, one of our key Pathways strategies was to engage clergy leaders in efforts to
improve care of the seriously ill and dying. Knowing the role of the church in our African
American community, we believed this was a critical strategy to address the needs of
African Americans this important population in our community. However, as a secular,
freestanding bioethics center, we were not certain how willing clergy would be to engage
with us in this endeavor.
Our first step, therefore, was to invite two prominent clergy, one white and one African
American, to provide leadership and credibility to this project. Both were affiliated with
the Center in volunteer leadership roles. After several initial meetings, each invited a
handful of close colleagues to join a steering committee to develop strategies to
accomplish our goal. Eventually, using a peer-to-peer approach, a very strong diverse
steering committee of more than three dozen prominent clergy developed Compassion
Sabbath .
Data was collected from clergy in one-on-one interviews, focus groups and pencil and
paper surveys. We engaged an outside research firm and were able to gather statistically
valid information. Interestingly, across faith traditions, race, and educational variations,
clergy reported that ministry to the seriously ill and dying as among their “high” to
“highest” callings (nearly three-fourths). Although they indicated that they felt they were
better at ministering to the seriously ill and dying than were others in their congregations
clergy did not feel that they did a very good job. The reasons given for this selfproclaimed inadequacy closely mirrored those given by physicians in various studies, i.e.,
their seminary curriculum did not address these issues. Moreover, they were unaware of
resources available to them to shore up or improve their skills.
Based on the experience of steering committee members and the data we collected, a
comprehensive multi-faith initiative was developed that the group named Compassion
Sabbath .
Components of this program included:
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A day-long leadership conference for clergy only.
A resource manual that provided sample sermons, homilies, prayers, poems,
songs, and religious text from a variety of religious traditions.
A workshop for clergy and lay leaders on end-of-life care, providing information
about advance care planning, pain management, conflict resolution within health
systems, etc.
A prayer breakfast.
Each clergy who attended the leadership conference was asked to make a personal
commitment, including participation in Compassion Sabbath weekend. On a highly
publicized designated weekend, clergy across our community who had participated in
Compassion Sabbath were asked to speak from the pulpit about their duties and
obligations and those of their congregation to the seriously ill and dying from their
specific theological perspective.
Careful attention was given each step of the way to involve highly regarded local and
national African American clergy in leadership roles. For example, we hosted Dr.
Gardner C. Taylor who Ebony named one of America’s greatest preachers and who one
of our co-chairs referred to as the “dean of American preachers” to lead the prayer
breakfast, and Dr. Wallace S. Hartsfield, a highly revered Kansas City clergyman and
former chairman of the Congress of Black Churches, to be the final speaker at the
Compassion Sabbath leadership conference. The outcomes were well worth the effort.
On Compassion Sabbath weekend, more than 80,000 people in Kansas City heard their
clergy talk about the importance of spiritual care of the dying. As one clergy said, “That’s
as many people as saw the Chiefs play that weekend at Arrowhead Stadium.” In Kansas
City, that’s a lot of people.
More importantly, we saw faith communities, including a significant number of African
American congregations, take action and develop 9/ongoing efforts. The impact of this
program was significant, for example:
•
•
•
•
The percentage of faith leaders in Kansas City who thought their congregation
ministered “very effectively” to the seriously ill and dying increased by 33%.
The number of congregations who had programs or other means of teaching
members how to minister to the seriously ill and dying increased by 48%.
The median number of members involved in ministry to the seriously ill and
dying in Kansas City congregations increased by 60%—from five to eight in one
year.
The percentage of faith leaders who rated the overall quality of their
congregation’s ministry to the seriously ill and dying as better than the previous
year increased by 50%.
Not long thereafter, we took on another project specifically attempting to understand the
experiences and perceived needs of African Americans, Latinos, Vietnamese and poor
whites at the end of life. We called this project Trusting Our Differences .
Trusting Our Differences
The Kansas City Area Hospital Ethics Committee Consortium celebrated its twentieth
anniversary in January 2006. We believe it to be the oldest continuously functioning
ethics committee network of its kind in the United States . It has also been a powerful
driver of many successful Center projects, and members of the consortium were
instrumental in helping our staff to develop the three-year initiative, Pathways to Improve
End-of-Life Care: A Community’s Approach. Members of the consortium are chairs of
ethics committees or their designees and reflect the composition of ethics committees
across the United States, i.e., they are, generally speaking, not people of color. However,
early in the planning of Pathways , we realized the necessity of engaging and learning
from all members of our community.
Our immediate goal was to “seek to understand differences in knowledge, ideas, and
attitudes among persons of diverse cultural backgrounds to improve communication
regarding health care decision making at the end of life.” Our long-range goal was to
elevate the importance of learning about diverse cultures in programs for improving endof-life care by building and enhancing relationships with leaders from diverse
communities in the Kansas City area. We also wanted to develop and test the
effectiveness of a cultural diversity intervention targeted at ethics committee members.
We wanted to provide a forum in which to “confront the dilemma of difference,” and our
hope was to “transcend the difficulties difference implies.” We wanted to persuade
clinical leaders “to listen actively and ask questions that would help them learn about
cultural diversity.”
To better employ the active listening model, we hosted a series of panel presentations
over several months with participants from diverse ethnic, racial, and socioeconomic
backgrounds. Each panelist was asked to tell one or more personal or professional stories
about end-of-life care and to dialogue with consortium members about their experience.
The idea was to provide a forum, literally a “safe place,” where local ethics committee
leaders could engage in open, honest dialogue about issues that made them feel inept,
uncomfortable, or awkward when treating patients with different cultural perspectives.
Flaws in the plan were apparent almost immediately, and significant modification was
necessary. Consortium members were extremely uncomfortable because it “felt like our
visitors were being objectified.” The conversations did not distinguish cultural relativism
from ethical relativism, and, although some wanted to have an intellectual/analytical
discussion about these theories, others thought the discussion appeared confrontational
and even hostile toward our guest panelists.
Imagine the Center’s distress: some participants believed that the process was damaging
the personal or professional relationships they already had with panelists and
organizations they represented. In hindsight, providing a clearer rationale for
participation could have mitigated these tensions but no such plan had been established.
For nearly six months, Consortium members and Center staff struggled with the plan. As
the divisiveness of the project increased among Consortium members, we realized that
another strategy was needed. Nevertheless, the experience actually strengthened the
Center’s resolve to address cultural diversity in the context of the project.
“If at first you don’t succeed, try again.” This adage, often taught to small children,
became the mantra of staff working on cultural diversity; and, in 1999, we began the
project anew, retaining the “active listening/learning” model, but with a smaller task
force (members of the Consortium, rather than the entire group), and with clarified goals
and objectives.
The methodology was also refined to take us outside the confines of the Center to places
where diverse groups live and work. Volunteers from local social service organizations to
were asked to develop a set of diverse end-of-life narratives and tools to facilitate active
listening and ethical discourse. The narratives would then be used to develop a set of
recommendations for how ethics committees can address cultural issues as a way to
improve the care of seriously ill and dying people.
In the process, we hoped to learn how individuals from various cultures define “dying
well” and about institutional or systems barriers that they think makes dying well either
difficult or impossible to achieve. We hoped to learn how they derive their knowledge
and the sources they turn to for advice and support. We also wanted to learn about
variations in orientations to the self and family and willingness to talk about dying and
death.
Assembling the task force took tenacity and salesmanship. Membership recruitment was
much more difficult for this task force than for many others that the Center has
established over the years. Many potential members said the project was too time
consuming or that they did not have the “expertise” necessary to participate. We also
came to realize that many long-time Center volunteers were not comfortable in the role
we were asking them to assume.
These difficulties notwithstanding, we eventually assembled a task force of eleven
highly-motivated volunteers, including three physicians, four nurses, a chaplain, and two
social workers. Ultimately, nine people participated in the interviews as “active
listeners.” Ten Center staff members including, among others, a physician/ethicist who
had practiced medicine in the county, an attorney, and a social worker also participated in
the program.
A nurse with formal training in ethics, agreed to manage the project. Her interpersonal
and communication skills were outstanding, and she was excellent at building
relationships and doing effective community outreach. Perhaps most important, she was a
good listener and was willing to take on a difficult project. We knew that we needed a
project manager who would be morally courageous and willing to work with many
people to accomplish the goal. From the outset, we knew that we were on “terra
incognito.” We were, in effect, following maps like those that guided the ancient
mariners to lands unknown. As the early sailors were warned, so also were we: “You are
now entering uncharted areas; ’here be dragons.’”
An advisory committee was assembled that included both local and national experts in
cultural diversity. The advisory committee met once as a whole, but members of the
committee consulted with staff and several contributed to publications about the project.
Advisory committee members were culturally diverse, multidisciplinary, highly skilled,
and professional. Its members included a physician; professors of nursing, sociology, and
ethics; a Holocaust educator; and a civic leader.
A medical anthropologist was also enlisted to provide technical assistance and advice to
the task force through calls, emails, and written recommendations. The task force met
frequently to receive reports from the small groups and to share their experiences. We
also read and discussed the literature related to cultural diversity and supported one
another emotionally.
The initial assignment for taskforce members and Center staff was to identify four
diverse communities on which to focus and to find partnering agencies in those
communities. By size, African American and Latino communities were at the forefront of
our project; our other two choices were less obvious. After much discussion, we agreed
that demographically the Vietnamese, Hmong, and Lau communities were significant,
and we agreed on the Hmong. We also decided, after much debate, to focus on
Caucasians of low social and economic status as the fourth group. We wanted to
interview people who might be especially vulnerable for reasons of their culture,
ethnicity, race, or class.
We divided into four work groups, each group focusing on one community. The initial
responsibility of each group was to secure a partnering agency. We began by calling on
social service agencies that served individuals in the designated communities. At a snail’s
pace, agreements were made, participants were identified, and a series of panels or
interviews were scheduled.
For the purpose of this paper, we will focus on our experience in the African American
community. It took some time to identify an African American organizational partner for
this project. Even though the Center has a good relationship with Kansas City ’s Black
Healthcare Coalition and has often relied on our relationship with them for similar
projects, our funding placed geographic limitations on us that precluded the Coalition as a
partner. Fortunately, an African American nurse on the task force made contact with a
long-time nursing colleague who assisted us in forming a relationship with a large
African American church. Based on her relationships, six members of the church agreed
to share their stories.
Their pastor more than 25 years told about his wife, who died eight years earlier, after
being diagnosed with ovarian cancer. Her cancer had spread to the lining of her stomach,
aorta, and liver. From the time of her diagnosis until her death was only four weeks.
She had surgery and was in and out of the hospital frequently during that time. At her last
admission, she was told that her cancer “was in her bones” and that she had only a few
days to live because her “platelets were being eaten up.”
While in the dying trajectory, medical students were brought in “to drill in there to get
this bone marrow.” The pastor said they had been through a lot and his wife was in pain.
A medical student who attempted the procedure failed and was instructed to by the
attending physician to “try again.” The pastor said, “I told him to get the best person here.
Hit it. Get it. And not be experimenting. I think sometimes there’s a lot of
experimentation going on. I don’t want to sound . like I am dealing with racism. I don’t
know that they wouldn’t have done the same thing, but we’re not welfare recipients,
we’re paying. And I want the best medical, and I’m willing to pay for it, and I don’t want
anybody experimenting at that time.. So, that was a problem for me.”
Another participant, a 40-year-old African American intensive care nurse told about the
unexpected death of her husband who was a paramedic. Because of a debilitating cardiac
condition, he had been moved to a “desk job,” and while attending a professional
conference out of town, he was found dead in his hotel room.
When she and her family went to identify his body, the morgue was closed. They were
told they could not see his body that they would have to wait until they got back home to
see him. She said she “tried to push it way back into the back of her mind, but the only
thing they had to identify who we were was that all of us were black. So, I kept thinking
that they wouldn’t do this to a white person.. Maybe if I had walked in with my nursing
license?”
Along the way, it became clear that we needed to modify our agenda. We were asking
about cultural or anthropological ideas regarding death and dying, but those we
interviewed were more interested in describing what we began to refer to as their
collisions with the health care entities. Everyone we talked to had a story about the
difficulties he or she had experienced with health care providers. .
What started out to be a research project exploring cultural preferences at end of life
evolved into a collection of personal stories that revealed the ineptness of providers and
organizations to communicate with, and to care for, individuals who were different from
them. It also revealed distrust and skepticism among African Americans about the
motivation of health care professionals. Some even questioned our the Center’s intent.
Unfortunately, we heard similar stories from the other designated populations. The task
force members felt guilt and angst.
We had not anticipated this turn of events. Therefore, the struggle to provide a framework
for these findings presented a new and more challenging task. The project director asked
the program team and the task force to meet together to probe the issue face-to-face. In
that meeting, each person was asked to recommend how we could best use the stories we
had heard. Their suggestions varied from passionate comments like, “I just want to tell
the truth” to compiling a list of recommendations for all ethics committees regarding
vulnerable and diverse patients. Motivation to do something significant was high, but no
clear plan had yet emerged.
As staff read and reread the reams of narratives, we recognized that we were becoming
more aware of our own biases and shortcomings related to cultural, ethnic, and class
issues. The act of listening had been a transformative experience for the task force
members and ripples of that transformation were still being felt. Out of the ferment, a
solution began to take shape. Why, we asked, couldn’t we develop a tool that would help
others have a similar experience?
We chose a dozen excerpts from the narratives that seemed to have a potential for
prompting self-reflection. The task force and staff reflected on these excerpts and took
them to the larger group, the Kansas City Area Hospital Ethics Committee Consortium.
Finally, eight excerpts were chosen as the basis for a cultural diversity tool.
The task force and program staff met again. Working in small groups, they asked
introspective questions based on their reading of the narratives. These questions were
subsequently revised and edited many times by Center staff with input from the
participating agencies and expert advice from the advisory council. Additionally,
program staff completed a list of recommendations for ethics committee members whose
responsibilities included helping organizations do ethics in culturally diverse situations.
These recommendations and the cultural diversity tool appeared as special supplements
in an issue of Bioethics Forum .
As a finale to this project, the Bioethics Center held a summit in February 2002 to discuss
cultural diversity — the discoveries that were made and their implications for our
community. More than 200 thought leaders participated. Without question those who
attended comprised the most diverse group of people the Center had ever convened.
The Center and its community partners remain committed to searching for new ways to
hear and see who we are, collectively and individually, and how we can ease the ethical
tensions in the health care experiences of persons who are especially vulnerable because
of cultural, ethnic, or class distinctions.
Based on the stories we heard in the Trusting Our Difference project, we knew that health
care professionals needed additional education and training to provide good care at the
end-of-life and that there was a need to specifically address needs of African Americans
and other people of color.
EPEC (Education for Physicians on End-of-Life Care)
The American Medical Association had developed and distributed an outstanding end-oflife care curriculum commonly referred to as EPEC (Education for Physicians on End-ofLife Care) and hosted several train-the-trainer faculty development programs. The Center
took applications of local physicians and served to facilitate and coordinate EPEC
trainings in Kansas City with a goal of presenting EPEC to 10% of all physicians in the
metropolitan area. We achieved this goal without difficulty. However, when we took a
look at who had attended these sessions, African American physicians were
underrepresented.
To remedy this problem, we went to the Black Health care Coalition and asked them to
partner with us to do an EPEC training specifically targeting African American health
care professionals. We agreed together to identify and financially support a highly
regarded African American physician and nurse to become EPEC trainers.
We also agreed that the Coalition would be responsible for recruiting African American
clinicians to attend and that the Center would pay the Coalition to do recruitment.
Together we agreed that we would invite Dr. Richard Payne, a nationally recognized
palliative care physician then at Sloan Kettering in New York and now Director of the
Institute on Care at the End of Life at Duke University’s School of Divinity, to serve as
the keynote speaker.
[Ultimately, Dr. Payne served as principal investigator for a Robert Wood Johnson grant,
to develop an addition to EPEC called APPEAL (A Progressive Palliative Care
Educational Curriculum for the Care of African Americans at Life’s End)].
Once again, by making this commitment and investment, the Center for Practical
Bioethics learned a great deal and strengthened our resolve to enrich our understanding of
care of the seriously ill and dying by working with African Americans and other diverse
populations.
What We Learned
•
•
•
•
•
•
•
•
Nothing is as important in relationship building as is face to face communication.
Letters of invitation are necessary but not sufficient. Finding intermediaries who
are willing to “broker” relationships can be very helpful
Commit to honest communication with all parties even when it feels risky. Learn
to actively listen and to apologize when mistakes are made. Be willing to be
vulnerable. The views and perceptions of others may be different than your own
and sometimes are hard to hear. Don’t attempt to refute or explain away the
experiences of others that are in conflict with your own.
Make a commitment at the beginning of a new relationship between individuals or
organizations to engage in reciprocal relationships that you hope will lead to
genuine engagement.
Identify and involve leaders from communities with whom you wish to work in
planning the project. Good intentions can be easily misunderstood. Don’t develop
a project and then try to “sell” it to others. Together, develop and agree upon
clearly stated goals, strategies, and rules for participation. Be prepared to
compromise and to include in the agenda a broader scope of concerns than your
own.
Even if you are a secular organization, recognize the importance of clergy in the
African American community. Respect and appreciate the significance for many
who are “trying to understand God’s will.”
The majority white population in our country tends to value and primarily rely
upon written communication. Understand the importance of an oral tradition.
Learn to actively listen and to value story telling and narrative.
Be tenacious. Making a commitment means sticking to it even when situations are
complicated and relationships may be strained. Remember the power of saying,
“I’m sorry” and “thank you.”
Don’t go away when the project is over. Build on the relationships that have been
established. Don’t imagine that your organization should always be in the lead.
Although national health policy and Medicare and Medicaid impact care that people
across this country receive, health care is fundamentally a local enterprise. Providers such
as physicians, nurses, pharmacists, and hospitals are licensed by state boards. Psychosocial/spiritual care is provided by families and faith communities. And the institutional
policies of the local hospital, nursing home, and hospice have a direct impact on care
people receive. Very few Americans ever travel more than 150 miles in their lifetime to
receive care.
End-of-life care is community centered. The authors believe that death and dying happen
in a social context and that our communities and the partnerships we form in those
communities can significantly increase and improve care of at the end of life for African
Americans.
The Case Study
“African Americans have been caring for their loved ones at home since the beginning of time. It
was never called HOME CARE. They have cared for their dying relatives equally as long. It was
never called HOSPICE. Relatives come home from various parts of the country to relieve the
caregivers, and it was never called RESPITE CARE. They come to give relief to mama, papa,
sisters, brothers, aunts, uncles, cousins, grandma and grandpa. They talk with each other, share
experience[s] and give advice and counsel. It is never called NETWORKING. Last, but not least,
they serve as volunteers in their own communities, in their own churches, and on their own
streets. They wear no uniforms, record no hours and receive no awards. Nor do they expect to be
rewarded. It is family caring for family, neighbors caring for neighbors and communities caring
for each other.”
—Bernice Catherine Harper, MSW, MSH, PhD
The Last Miles of the Way Home, a National Conference to Improve End-ofLife Care for African Americans, was held in February 2004 in Atlanta, Ga. The
powerful climax of the conference was the Town Hall Meeting moderated by renowned
journalist Mr. George Strait. Mr. Strait designed a role-playing scenario in which a
group of distinguished national experts and conference participants engaged in
theatrical dialogue about an African American family facing end-of-life care decision
making. The Town Hall Meeting, “Bringing the Message Back Home: Taking
Action, Making Changes,” examined how one African American family moved
quality end-of-life care from concept to reality.
2
Moderator:
• George A. Strait Jr.
Assistant Vice Chancellor, Public Affairs, University of California, Berkeley, CA
Panelists/Performers:
•
Beny Primm, MD
Director, Addiction Research & Treatment Corporation
•
President, London & Associates
•
Glenda Hodges, PhD, JD, MDiv
Director, Program in Spirituality and Medicine, Howard University College
of Medicine
•
Richard Payne, MD
Director, Duke Institute on Care at the End of Life
•
LaVera Crawley, MD
Medical Ethics Researcher and Lecturer, Stanford University
•
Aranthan Jones
Former Senior Health Advisor
Congresswoman Donna M. Christian-Christiansen, MD
US Virgin Islands
•
Darryl Crompton, JD, MPH
Vice President, Research and Program Development
MasiMax Resources Inc.
The Road Home: A Father and Daughter’s Journey
3
Mr. Beny Primm is a successful 75-year-old African American business owner
and widower with one child, daughter Gwendolyn, who is a registered nurse. Mr.
Primm lives alone in the home he shared with his wife of 52 years; she passed away
several years ago. He is a very independent, spiritually rooted man who has been an
active member of his community for more than 40 years.
Mr. Primm is a well known and highly regarded individual in his community and
his home church. Mr. Primm has developed and maintains a strong relationship with
his former classmate and attorney, Darryl Crompton, and his long-time pastor, Rev.
Glenda Hodges. Mr. Primm regularly seeks their legal counsel and spiritual guidance.
Mr. Primm has a loving relationship with his daughter; however there are
strained periods in their interactions on a daily basis. Recently he is feeling vulnerable
about his loss of control over his life and concerned about his overall quality of life.
Gwen is feeling the stress of having to support and deal with issues related to her
father’s care, while raising her three teenage daughters. Gwen’s husband runs the family
business started by her father.
Mr. Primm is forgetful and has experienced some lost of function over the past
few years. After his third car accident in a year’s time, his daughter confiscated his car
keys. Since his last car accident, Mr. Primm has moved in with his daughter and her
family.
Mr. Primm has developed an intermittent palsy on his left cheek, and he is
aphasic at times. He is on blood pressure medication but does not like how the
medication makes him feel. Mr. Primm also suffers from diabetes and has recently had
his left leg amputated.
Over the course of the last six months, Mr. Primm has been diagnosed with a rare
blood disorder; his health is declining rapidly. Dr. Payne, the family physician of more
than 20 years, has informed Mr. Primm and his daughter that the disease can only be
treated with an expensive bone marrow transplant.
4
Although Dr. Payne and his colleague, Dr. Crawley, passionately advocate on Mr.
Primm’s behalf for the transplant, Mr. Aranthan Jones, director with the Center for
Medicare/Medicaid Services has emphatically denied the request for the transplant.
Dr. Payne has informed Mr. Primm and his daughter that based on the progression of
his illness and Medicare’s decision, he should consider other options of care, such as
hospice.
While Dr. Payne would like to refer Mr. Primm to hospice immediately,
Mr. Primm and Gwen are still very reluctant to give up the fight. At this stage, the
family meets with the principals in Mr. Primm’s life (his pastor, doctor, and attorney) to
discuss his options for care. Gwen is concerned about the quality of her father’s
remaining time. As a nurse Gwen is very familiar with the under treatment of pain and
the reports that pharmacies in predominately Black and Hispanic communities are not
stocking the proper pain medications. As Mr. Primm’s illness advances, Gwen would
like his cultural preferences acknowledged and respected. Because of the conflict that
has developed between the two of them, Gwen would also like to be reassured that his
psycho-social concerns are met.
In previous conversation with Rev. Hodges and Dr. Payne, Mr. Primm revealed
that his primary concerns are that he will be in severe pain, weak and addicted to pain
medications as his condition progresses. He also states that it is important that he not
become a burden to this daughter. He expresses that hospice care means giving up and
that his quality of care will decrease once he submits to hospice. Mr. Primm is also
worried about his life-long business and he wants to make sure that everything “is in
order” for his son-in-law to fully take over the business once he relinquishes control of
the company.
Gwen strongly expresses her frustration and anger to Rev. Hodges and Dr. Payne
that she was not brought into the conversations about her father’s health earlier on
given that she is his primary caregiver. Dr. Payne and Rev. Hodges acknowledge Gwen’s
frustration, and they reassure her that the lines of communications will be open to her
regarding her father’s continuous medical and spiritual care.
5
Rev. Hodges informs Gwen and Mr. Primm that hospice care will allow them to
have the quality time they are both seeking and not overburden Gwen with his daily
medical and personal care. Gwen states in no uncertain terms to Rev. Hodges and Dr.
Payne that in considering hospice care for her father it does not mean that she giving up
her role as his primary caregiver. Rev. Hodges informs Mr. Primm that hospice is
comfort care and that accessing the services does not mean giving up; she assures him
that his unquestionable faith and spiritual beliefs will guide him through his journey.
Because the hospice program is run by their church, Rev. Hodges informs Mr.
Primm and Gwen that his home church is an extension of his family; members of the
church and the community will be at his side throughout his need for care. Rev. Hodges
states that the church fully recognizes the cultural norms and perspectives of the
community they service; it is vowed by Rev. Hodges that should Mr. Primm and his
daughter elect to utilize hospice services, his cultural needs and preferences will be
honored and respected. In addition, Rev. Hodges tells Gwen that hospice will also
address her father’s psycho-social and spiritual needs. Rev Hodges comforts Mr. Primm
with song and prayer during their meeting together.
Mr. Primm’s attorney, Mr. Crompton, suggests that Mr. Primm give his daughter
power of attorney over his legal and financial affairs and reviews the advance directive
document with Gwen and Mr. Primm. He also discusses the legal matters Mr. Primm
will need to attend to in the very near future concerning his company. Mr. Primm is
comfortable with his attorney’s advice and he agrees that all legal matters relating to his
medical care and financial business should be taken care of immediately with his
daughter and son-in-law by his side.
Mr. Primm and his daughter reviewed their options for care together, affirming
and reaffirming the full conversations. At the end of the meeting, confident that they
have exhausted all options for curative measures and that their questions and concerns
were fully acknowledged and addressed, they requested that Dr. Payne refer them to
hospice care services.
***
6
The two-hour session provided a stimulating and insightful view into how an
African American family addresses the end-of-life care issue for a family member.
Mr. Primm and his daughter Gwen wanted their concerns to be heard and questions
responded to before making any final decisions about beginning hospice care. In the
end, Mr. Primm and his daughter took the action and made the change to ensure that
Mr. Primm’s final journey home was one of comfort, dignity, and respect and that his
cultural preferences, spiritual needs, and psycho-social needs would be met.
During the theatrical scenario, the panelists/performers explored various topics such as:
•
Understanding the cultural needs and preferences of diverse populations seeking
end-of-life care
•
Acknowledging the traditions of care for African Americans from its historical
and cultural perspectives
•
The importance of listening to the patient and family member(s); addressing
their concerns and fully answering their questions
•
The role of the church in the spiritual care of the patient and their family
members
•
The fear that the patient will be in severe pain and that pharmacies in
predominately African American neighborhoods will not stock proper pain
medications
•
Addressing the misconceptions about hospice care
7
Questions for Discussion
1. Why do you think it was important to have a meeting with Mr. Primm and his
daughter? How likely is this scenario to be played our in a real life situation?
2. How were the principals involved in assisting Mr. Primm and his daughter with
making decisions regarding his care? What were their individual roles and why
was each of them important to this meeting?
3. What were some of the major issues that needed to be addressed?
4. There is an underutilization of hospice care with African Americans. Can you
identify some of the reasons Mr. Primm and his daughter were initially reluctant
to consider hospice as a viable option for his care?
5. Do you think this situation would have been different if this were not an African
American family? If so, how do you think it would have been different?
1
Ibrahim Abdul-Malik, EdD
Shaykh
Center for Empowerment and Personal Growth, New York, NY
Ibrahim Abdul-Malik, is director of the Center for Empowerment and Personal Growth. Dr.
Abdul-Malik is also a certified master practitioner of both Neuro-Linguistic Programming and
Ericksonian Therapeutic Hypnosis and a member of the World Health Community of NLP
Practitioners.
After earning his doctorate at Harvard University in 1971, Dr. Abdul-Malik continued his work in
education with the New York City school system. He served as science adviser for UNESCO in the
Republic of Maldives, S.E. Asia, where he organized the first junior college in that country and
became its first president. He also served as adjunct professor at The City College and Baruch
College, parts of the University System of New York City. For 10 years, Dr. Abdul-Malik taught
school-aged actors on Broadway and in television, particularly "The Cosby Show."
Dr. Abdul-Malik has just completed his third book, entitled: The Joys and Rewards of PrayerA Guide for Beginners, A Reminder for Believers. He is currently preparing the young person's
edition of this book. Shaykh Abdul-Malik is general secretary of Imams Council of New York,
whose members provide religious leadership for more than 100 Masjids throughout the New
York metropolitan area. He also is an elder of the Admiral Family Circle Islamic Community, an
arm of which, the Malik Shabazz Human Rights Institute, is accredited to the United Nations as a
non-governmental organization, with special consultative status.
Fay Burrs, RN, BSN
Director of Access and Diversity
National Hospice & Palliative Care Organization (NHPCO), Alexandria, VA
Fay Burns is the former Interim Director of the Foundation for Hospices in Sub-Saharan Africa
(FHSSA) and directed the Offices of Access and Diversity at the National Hospice & Palliative
Care Organization in Alexandria Virginia. She shared the responsibility of assisting and
educating providers regarding issues of cultural competency and sensitivity to the uniqueness
and diversity of patients that may impact end-of-life-care. Her role as Interim Director for
FHSS focused on supporting organizations in Africa and the United States to provide hospice
and palliative care and support services in sub-Saharan Africa. With more then 27 years of
experience in various areas of health care Ms. Burrs has committed the last 15 years to hospice
and palliative care.
Ms. Burrs received a Bachelor of Science from Columbia Union College and is currently
pursuing a graduate degree in health administration. She is an experienced international and
national speaker and lecturer on end-of-life care issues, cultural diversity, cultural competency
and program development. She was nominated for Nurse of the Year award and her past
leadership of the nurse section for the National Council of Hospice Professionals. Ms. Burrs also
received recognition from the National Black Nurses Association (DC Metro) and Washington
area and the Women’s Ministry for the development of Community Health Programs.
2
Kelvin Calloway, D.Min
Pastor
Second A.M.E. Church, Los Angeles, CA
Reverend Kelvin T. Calloway, D.Min, was born in Herlong California. Educated in the Mobile
County (AL) public school system, he received the Bachelor of Science (Business
Administration) degree from Texas Southern University (Houston, TX) in 1975. One year later,
Calloway earned a Master of Business Administration (Organizational Behavior and Marketing)
degree from the University of Illinois - Champaign. Further studies resulted in the Master of
Divinity degree from Alabama Interdenominational Seminary (Mobile, AL) and a second MDiv along with the Doctor of Ministry (Ethics and Preaching) degree - from the Southern California
School of Theology at Claremont in 1988.
Dr. Calloway has varied business-related experiences. He has been employed as an Industrial
Engineer with Ingali's Shipbuilding, Pascagoula, Mississippi, a Financial Services
Representative with the Metropolitan Insurance Company, a Commerical Investment Specialist
with Century 21 Real Estate Corporation, Adjunct Instructor in the Department of Business
Administration, S. D. Bishop State Community College, Executive Director of Strongly Oriented
For Action (a church sponsored social service agency) La Jolla, California. Additionally, he
served as visiting Professor of Preaching and Ethics, St. Paul School of Theology, Kansas City,
Missouri and a member of the National Advisory Committee for The Robert Wood Johnson
Foundation's Last Acts Campaign.
Dr. Calloway was ordained an itinerant deacon in the Central Alabama Conference of the Ninth
District of the A.M.E. Church in 1984 and an itinerant elder in the Southern California Annual
Conference of the Fifth District of the A.M.E Church in 1986. He has pastored rural, urban and
suburban churches in Alabama, California and Kansas. Dr. Calloway is the recipient of
numerous honors and awards. Among them are Outstanding Young Men of America, 1979,
Who's Who of La Jolla, California 1989, and the Wilshire Preaching Award, Claremont,
California 1988.
3
Congresswoman Donna Christian-Christensen, MD
United States Virgin Islands
The Honorable Donna M. Christensen continues to distinguish herself as a leader in the United
States Congress. As a member serving her fifth term, she is the first female physician in the
history of the U.S. Congress, the first woman to represent an offshore Territory, and the first
woman Delegate from the United States Virgin Islands.
In the 109th Congress, Delegate Christensen serves on the following House Committees,
Subcommittees and Caucuses: the Committee on Resources, which oversees territorial and
public land issues, the Committee on Small Business, which oversees entrepreneurship and
business activities and the Homeland Security Committee which oversees preparing the nation
to prevent and withstand attack.
Delegate Christensen is a Member of the Congressional Black Caucus and chairs the
Congressional Black Caucus' Health Braintrust, which oversees and advocates minority health
issues nationally and internationally; is a Member of the Congressional Caucus for Women's
Issues; Member of the Steering Committee of the Congressional Travel and Tourism Caucus;
Member of the Congressional Rural Caucus; Member of the Coastal Caucus; Member of the
Congressional Fire Caucus and additionally, a Member of the Congressional National Guard and
Reserve Caucus.
She earned a Bachelor of Science from St. Mary's College in Notre Dame, Indiana and an M.D.
from George Washington University School of Medicine in Washington, D.C.
Christensen began her medical career in the Virgin Islands in 1975 as an emergency room
physician. She served as staff physician at the Maternal & Child Health program, Medical
Director of the Nesbitt Clinic in Frederiksted, Director of the Frederiksted Health Center,
Director of Maternal and Child Health and Family Planning, served as the Medical Director of
the St. Croix Hospital and rounded out her medical career as the Territorial Assistant
Commissioner of Health and as the Acting Commissioner of Health.
Christensen is a member of the National Medical Association, the Virgin Islands Medical
Society, the Caribbean Studies Association, the Caribbean Youth Organization and the Virgin
Islands Medical Institute.
4
Myra Christopher
President and Chief Executive Officer
Center for Practical Bioethics, Kansas City, MO
Myra Christopher became president of the Center for Practical Bioethics in December 1994, and
continues to serve as its executive director, a position she has held since the Center's inception
in 1985. In addition to providing oversight to the Center, Christopher served as the national
program officer of the Robert Woods Johnson Foundation's National Program Office for Statebased Initiatives to Improve End-of Life Care. These roles allow Christopher to continue her
lifelong mission to improve care for seriously ill people and their families. An author and
frequent speaker on bioethical issues, Christopher has made presentations to such prestigious
national organizations as the American Hospital Association, Group Health Association of
America, the National Health Lawyers Association, AARP, and the American Philosophical
Association.
Because of Christopher's involvement with the Nancy Beth Cruzan case, Senator John Danforth
sought her assistance in drafting and introducing the Patient Self-Determination Act. In 1991,
she was appointed vice-chair of the Kansas Commission on the Future of Health Care by the
governor and served in that capacity until 1994. She also consulted with the Joint Commission
on the Accreditation of Healthcare Organizations on patients' rights and organizational ethics
standards.
Christopher is currently a member the National Advisory Board for the Duke Institute for Care
at the End-of-Life, the expert panel for the Rosalynn Carter Institute for Human Development
and the advisory board for the Federation of State Medical Boards. She is formerly a member of
the American Bar Association Commission on Law and Aging,
She has been named an honorary member of Alpha Sigma Nu, Rockhurst College and the 1996
Alumnus of the Year for the College of Arts and Sciences at the University of Missouri – Kansas
City. Christopher was nominated for the Gleitsman Foundation's Citizen Activist Award for
2000 and in that same year was chosen one of the "Top 150" citizens of Kansas City in
celebration of its sesquicentennial.
Recent honors include the prestigious 2004 Marian Grey Secundy SANKOFA award for her
"deep commitment and outstanding work to improve palliative and end-of-life care for African
Americans," and the 2003 National Association of Attorneys General President's Award. In
2003 she was recognized as an Honorary Alumnus of the KU School of Nursing.
Andrea King Collier
Freelance Journalist and National Health Care Advocacy Consultant, Lansing, MI
Andrea King Collier is a freelance journalist and a national health care advocacy consultant. Her
new book, The Black Woman’s Guide to Black Men’s Health will be published in February, 2007.
Her work in health care advocacy is guided by her own personal experiences and years of
interviews with everyday individuals who strive for access to quality care.
She is the author of Still With Me...A Daughter’s Journey of Love and Loss. She has written for
More, Women’s Day, Family Circle, Ladies Home Journal, Essence, Chicago Tribune, the
Lansing State Journal, the New York Times and others.
5
LaVera M. Crawley, MD
Medical Ethics Researcher and Lecturer
Stanford University School of Medicine Center for Biomedical Ethics, Oakland, CA
LaVera Crawley is a medical ethics researcher and lecturer at the Stanford University School of
Medicine Center for Biomedical Ethics. She is the recipient of a five-year National Cancer
Institute Career Development Award to study the effects of trust and perceived racism on
cancer prevention practices among blacks. Dr. Crawley received the Soros Faculty Scholars
Award (1999-2001) for the Open Society Institute's Project on Death in America, which
supported her project on developing and implementing a series of continuing education
programs on end-of-life care to educate African American physicians.
A graduate of Meharry Medical College, Dr. Crawley completed a residency in family medicine at
the University of California, San Francisco, and a research ethics fellowship at Stanford
University. She also participated in the Harvard Medical School Center for Palliative
Care Education Program. During the current 2003-2004 academic year, Dr. Crawley is on
educational leave from Stanford to complete her master's degree in public health at the School
of Public Health, University of California at Berkeley.
Dr. Crawley served as the first executive director of the Initiative to Improve Palliative Care for
African Americans and sits on its board of directors. She is the lead author of several
articles on the subject of palliative and end of-life care for African Americans. She also serves on
the executive board of Americans for Better Care of the Dying and is an adviser to the Alta Bates
Summit Ethnic Health Institute End-of-Life Decision-Making Project in Oakland, California.
Joseph Dancy Jr., PhD, MDiv, ThM
Professor
Ethelyn Strong School of Social Work at Norfolk State University, Norfolk, VA
As a gerontologist, Dr. Dancy is a professor in the Ethelyn Strong School of Social Work at Norfolk
State University in Norfolk, Virginia, where he also served as interim dean of the School of
Social Work. He earned his Bachelor of Arts degree from Virginia Union University in Richmond,
and his master of divinity degree from the School of Theology at Virginia Union University.
He earned his master of theology degree from Princeton Theological Seminary in Princeton,
New Jersey.
In addition to his theological training, Dr. Dancy received his doctorate in educational
gerontology from the University of Michigan. In 1995, he completed an intensive bioethics course
at Georgetown University. In 2002, he completed a sabbatical in bioethics that focused on
such topics as medicine, law, ethics and spirituality through Michigan State University's
Center for Ethics and Humanities. In the area of bioethics, Dr. Dancy has served on the
Internal Review Board (IRB) for Eastern Virginia Medical School in Norfolk. He also has served
as a consultant to the Center for Bioethics at Tuskegee University in Alabama and is a participant
in The Robert Wood Johnson Foundation-funded project on end-of-life issues.
Dr. Dancy, a native of Brooklyn, NY, is the author or co-author of articles and books related to his
areas of interest: spirituality and aging, caregiving and grandparents raising grandchildren. His
book, The Black Elderly: A Guide for Practitioners, was published through the University of
Michigan Press. He has served as a board member of the Southern Gerontological Society.
6
Willie Davis, PhD
Director
All Around the African World Museum and Resource Center, Lansing MI
Dr. Davis is the Director of the All Around the African World Museum and Resource Center. He
is an Adjunct professor at Davenport University and Lansing Community College. In addition,
Dr. Davis has taught courses in Black Studies, Human Services, Social Work, Sociology,
Education, Psychology and Interdisciplinary Studies, Diversity, and Racial and Ethnic studies
and conducted Seminars and Workshops at the College and University levels and for
professional groups in areas of Aging, Diversity, Health, Education, and Business. He has
traveled extensively through the inhabited continents.
He currently serves on the board of directors of El Hajj Malik El Shabazz Academy; a charter
elementary school and retains active membership in many African and African American
organizations including A Progressive Palliative Educational Curriculum for th Care of African
Americans at Life’s End (APPEAL), the National Association of Black Social Workers, National
Black United Front, Association of Classical African Civilizations, and the Black Data Processing
Association and APPEAL. Recently Dr. Davis has served as Co-Chair of the Ghana Committee of
the Lansing Regional Sister City Commission which has established Sister City Relationship
with the Aquapim South District in Ghana in West Africa and a Information and Technology
project in Dar Es Salaam, Tanzania.
Dr. Kweku (Willie) Davis is also President and CEO of DIANEX LTD. an investment and
international trade firm and The Davis Complex of which he is president and specializes in the
area of Cultural Sensitivity and Health Consultation and the Business incubation process.. He is
also a member of and one of the founders of the Greater Lansing Minority Business Association
and a past member of the Chamber of Commerce. Dr Davis has recently retired from the State of
Michigan as the Program Manager of the Medicaid Managed Care Ombudsman Program for the
Michigan Department of Community Health. In addition, he co-founded the Potter/Walsh
Neighborhood Association and he is past-president of Neighborhood Youth and Parent
Partnership Program. Writings include many articles on community organizing.
Diane Deese
Community Affairs Director
VITAS Healthcare Corporation, Chicago, IL
Ms. Deese has over 15 years of experience in the operational, marketing and public relations of
hospice programs. She is currently the community affairs director for VITAS Healthcare
Corporation. Ms. Deese has professional affiliations with the African American AIDS Memorial
Service, is a member of the task force on access to hospice care by minority groups for the
National Hospice and Palliative Care Organization. She is also a member of the National
Association of Black Health Executives, a board member for Kupona Network (first African
American AIDS Agency in Chicago) and a faculty presenter for the APPEAL project, an
educational program funded by The Robert Wood Johnson Foundation to train health care
professionals providing palliative and end-of-life care to African Americans. In November 1999,
Diane Deese was an award recipient of "Fifty African American Women Making a Difference" in
Chicago. These women were recognized for their outstanding career achievements and dedication
to the African American community. Ms. Deese is a trained emergency medial technician and is
continuing her studies in the areas of marketing and business management.
7
Michelle Grant-Ervin, MD, MHPE, FACEP
Medical Director
VITAS Innovative Hospice Care, Washington, DC
Michelle Grant-Ervin M.D., is a graduate of the Abraham Lincoln School of Medicine at the
University of Illinois class of 1981. She completed her residency training at Cook County
Hospital in Chicago in 1984 and holds board certifications in Internal Medicine and Emergency
Medicine. Dr. Grant-Ervin was inducted as a Fellow of the American College of Emergency
Physicians in1989 and in 2002. Her experience in emergency medicine includes serving as
Chair and Residency director of Emergency Medicine at Howard University Hospital from
1993 – 2003.
Additional training and education achieved by Dr. Grant-Ervin include:
A masters degree in Health Professions Education (MHPE) from the Department of Medical
Education at the University of Illinois conferred in 1995, a fellowship in Bioethics at the
MacLean Center for bioethics at the University of Chicago from 1996 – 1997, and a faculty
scholar appointment with the Project on Death In America funded by the Open Society Institute.
Dr. Grant-Ervin presently serves on three advisory boards which are: Iona Senior Services in
Washington DC, Center to Advance Palliative Care Studies (CAPC) at Mount Sinai Medical
Center in New York, and President-elect for the national advisory board for the American
Alliance for Cancer Pain Initiatives.
Currently Dr. Grant-Ervin is Medical Director for the Greater Washington office of Vitas
Innovative Healthcare Corporation and is faculty in the Department of Emergency Medicine at
the Georgetown/WHC Emergency Medicine residency program.
Dr. Grant-Ervin speaks locally, regionally, and nationally on issues of quality care at life’s end,
access to health care and a broad spectrum of issues impacting the navigation of care from the
Emergency Department thru our complex health network.
8
Harold P. Freeman, MD
Founder and Medical Director
Ralph Lauren Center for Cancer Care and Prevention, New York, NY
Dr. Freeman is founder and medical director of the Ralph Lauren Center for Cancer Care and
Preven- tion in Harlem, New York. He is currently a Senior Advisor to the Director of the
National Cancer Insti- tute (NCI). He holds the academic rank of Professor of Clinical Surgery
at Columbia University College of Physicians and Surgeons. Dr. Freeman is one of the foremost
international authorities on Interrelationships among Poverty, Culture Social Injustice and
Cancer and is the leading voice on cancer disparities.
For twenty-five years (1974–1999), Dr. Freeman was the Director of Surgery at Harlem Hospital
Center. For a five year period ending in September 2005, he held the position of an Associate
Director of the NCI and Founding Director of the NCI Center to Reduce Cancer Health
Disparities.
Dr. Freeman served as National President of the American Cancer Society (ACS) where he was
the chief architect of their initiative on Cancer in the Poor and was influential in making the
health concerns of the poor and underserved a national priority. In recognition of this
contribution, the ACS established the “Harold P. Freeman Award” which is given annually by
various ACS divisions throughout America to individuals who have made outstanding
contributions in the fight against cancer in the poor.
Dr. Freeman served as Chairman of the United States President’s Cancer Panel (PCP) for eleven
years. He was appointed for four consecutive three-year terms to the panel first by President
Bush in 1991 and subsequently by President Clinton in 1994, 1997 and 2000.
Dr. Freeman pioneered the “Patient Navigation Program which has proved to be a successful
model to reduce disparities in access to diagnosis and treatment of cancer particularly among
poor and uninsured people. Based primarily on the Patient Navigation model created by Dr.
Freeman in Harlem, “The Patient Navigator, Outreach and Chronic Disease Prevention Act” was
enacted by The Congress and signed by The President in June 2005.
Dr. Freeman received an AB Degree from Catholic University of America and an MD Degree
from Howard University. He was elected to the Institute of Medicine of the National Academy of
Sciences in 1997.
9
Bernice Harper, MSW, MSH, PhD, LLD
Former Medical Advisor, Department of Health and Human Services
Centers for Medicare and Medicaid. Washington, DC
Former Board President, Foundation for Hospice in Sub-Saharan Africa
Dr. Harper was the Medical Care Advisor to the Health Care Financing Administration in
Washington, DC. Her career, which has progressed to this most influential Federal level, has
focused on the area of health care and health care policy formulation. She has practiced in
varied settings and personified the values and ethical standards of the social work profession
even in the most difficult and highly charged political environments.
Harper earned her MSW degree from the University of Southern California in 1924 and an MPH
from Harvard University in 1959.
She was instrumental in developing long term program policies which highlight continuity-ofcare, including community and institutional care, and stresses the importance of psychosocial
components. Her commitment to the long term care of those in need has served to demonstrate
the best of the best for the profession and for those in need. Her insight and commitment to
professionals, especially social workers, who are under both personal and professional stress as
they work with patients in the final phases of their lives, combined with her perspective,
academic, and practice skills with their families, motivated her to produce a definitive
publication on death and the special needs for professionals to cope with their related stress.
The book, Death: The Coping Mechanism of the Health Professional was in advance of the
interest now placed on this area. Harper identified and labeled specific stages of coping with
death that are important to understand, especially for professionals living through the process
with clients.
Harper's work at the City of Hope in California as Chief Social Worker and her practice with
leukemia victims sustained her interest in the important needs of those with chronic and long
term illness. She is nationally recognized for her work and is sought after for training workshops
and conferences.
Bernice Harper has consistently been referred to as the professional's professional. Harper has
been able to represent social work values and bring them into policy statements. She is a
personification of social work's value base and has sustained that consistency in the Washington
scene through multiple and changing administrations as well as political appointees. She has not
compromised the long term health care needs of those in the country. She has also worked with
multiple government organizations around minority services and activities for professional as
well as other educational needs.
Harper has been active and served in leadership positions at NASW and the International
Conference on Social Welfare. She was the first recipient of the Knee/Wittman Outstanding
Achievement in Health/Mental Health Policy Award. As an international advisor Dr. Harper
visited South Africa and Zimbabwe as a member of the first western seminar to share and
explore hospice concepts with African countries.
10
LaVone V. Hazell, MS, LED, FT, CFT
Project Director
Palliative Care Training and Education Program, New York, NY
LaVone V. Hazell is a New York State licensed funeral director, a certified funeral service
practitioner with the Academy of Professional Funeral Service Practice, and is certified in
thanatology as a fellow (FT): Death, Dying and Bereavement, by the Association for Death
Education and Counseling (ADEC). She was the designer and project director of The Palliative
Care Training and Education Program for Caregivers in Minority Communities (PTEP),
sponsored by North General and Memorial Sloan-Kettering hospitals. With more than twentyfive years o f training experience, she has developed curricula for mental health, religious,
educational and AIDS institutions.
Ms. Hazell was a member of the board of directors of ADEC for two consecutive three-year terms,
and is mortuary officer for the United States Federal DMORT Region 2 Disaster Team, a
founding member of Homeland Security, a board certified expert in traumatic stress
(designate diplomate), with the American Academy of Experts in Traumatic Stress, an
instructor for, and member of the Faculty Council of the American Academy McAllister Institute
of Funeral Service, Inc., a member of the advisory board for the African American Church and
Community Perspectives for End-of- Life Care, and a member of Phi Delta Kappa Honor Society.
She has also published numerous academic articles and book chapters in the field of thanatology.
A graduate of Howard University and Fordham University, Ms. Hazell holds a Bachelor of Science
degree in psychology, a Master of Science degree in adult education and human resources, and is a
certified family therapist. Ms. Hazell is presenting as an online faculty member of AAMI.
Her major interest is the influence of culture on death rituals and the comparison of various
minority groups' practices relating to end-of-life events.
Karla FC Holloway, PhD
Duke University, Durham. NC
Karla FC Holloway, PhD, is the William R. Kenan Jr. Professor of English, Law, and Women’s
Studies at Duke University. She is the author of six books, including Passed On: AfricanAmerican Mourning Stories (Duke University Press, 2002). BookMarks—Reading in
Black and White—A Memoir, will be released this fall. She currently is at work on a
project on bioethics, race, and law. Dr. Holloway is an affiliated faculty member of Duke
University's Institute on the Care at the End of Life. She also serves on the Greenwall
Foundation's Advisory Board in Bioethics, the Center for Documentary Studies at Duke, and the
Princeton University Advisory Council: Program in the Study of Women and Gender. Dr.
Holloway received her AB from Talladega College, her MA and PhD from Michigan State
University, and her M.L.S. from Duke University Law School.
11
Camilla Hudson
Patient Advocate, Chicago, IL
Camilla Hudson is a freelance interior designer living in Chicago. Ms. Hudson attended the
University of Illinois in Urbana, Illinois and made a career change from the hectic, corporate
world into the design field partially due to assuming the role of primary caregiver to her aging
parents. As the demands upon her time increased, she found it necessary to have better control
over her work schedule in order to fulfill her obligations as their caregiver. Ms. Hudson is the
mother of one child and two adopted dogs, one of which is a Hurricane Katrina survivor. As a
result of her personal experiences with regard to end-of-life issues, Ms. Hudson has become an
active and vocal advocate of advance directives. She is committed to increasing public
knowledge and awareness of all end-of-life matters, particularly within the African American
community.
Bethsheba Johnson, MSN,CNS.GNP-BC
Luck Care Center, Chicago, IL
Bethsheba Johnson is a board certified gerontological nurse practitioner. She received her
Bachelor of Science in Nursing degree from Chicago State University and went on to complete
her Master’s of Science in Nursing at Rush University as a Clinical Nurse Specialist. In 1997,
Ms. Johnson completed her post Master’s certificate as a Gerontological Nurse Practitioner. Her
experience covers surgical nursing for patients with head and neck cancer, surgical intensive
care and pulmonary medicine. She has also been certified as an APPEAL (A Progressive
Palliative Care Educational Curriculum for the Care of African Americans at Life’s End
(APPEAL) and EPEC (Education for Physicians at End of Life Care) trainer.
Ms. Johnson currently works for the Southside Health Association at the Luck Care Center, an
HIV/AIDS Primary Care Ambulatory Center. The Luck Care Center’s 200 patients are primarily
African American and underinsured. The center provides HIV primary care, dietary consultation, substance abuse counseling, mental health counseling, bioelectric impedance analysis, peer
educators, support groups, clinical trails, complimentary therapies, prevention case
management, adherence case management, and HIV case management.
She is also clinical faculty for the Midwest AIDS Training and Education Center located in the
Jane Addams College of Social Work at the University of Illinois at Chicago. She was appointed
by Mayor Daley of Chicago to the Chicago HIV Planning Services Council and received an award
with her husband in 2002 from the AIDS Legal Council of Chicago as Provider Advocates of the
Year. In 2005, she was chosen as one of the recipients of The Body’s HIV Leadership Award in
the Outstanding HIV/AIDS Nurse Category. In2005, Bethsheba received the Excellence in
Health Sciences award from Chicago State University. Ms. Johnson has traveled to South Africa
with her husband to provide consultation to hospices caring for patients with HIV/AIDS. She is
also shares a membership position with Dr. William Johnson on the Board of Directors for the
Foundation for Hospices in Sub-Saharan Africa. In 2005, she and her husband have been
featured in the July/August edition of Positively Aware Magazine. Ms. Johnson has recently
been approved by the Clinton Foundation’s International Center for Equal Healthcare Access
(ICEHA) to Provide HIV/AIDS and Operational Training to Local Healthcare Providers in
Ethiopia.
12
William Johnson, MD
Medical Director
William A. Johnson, MD, is medical director of the Chicagoland Central program for VITAS
Innovative Hospice Care®. In this role, Dr. Johnson provides and oversees expert palliative care
and symptom management for a 300+-patient hospice program.
In addition to his responsibilities at VITAS, Dr. Johnson maintains a private practice, is
attending physician for several area hospitals, assistant professor of internal medicine at Rush
Presbyterian-St Luke's Medical Center, and medical director of the Luck Care Center, an
HIV/AIDS primary care clinic in Chicago. He also is affiliated with several professional
organizations including the Cook County Physician's Association, the American College of
Physicians and the National Medical Association.
Dr. Johnson dedicates much of his time organizations, such as the American Academy of HIV
Medicine and the Infectious Diseases Society of America, and to the relief efforts of organizations
such as the Foundation for Hospices in Sub-Saharan Africa (FHSSA).
Board certified in internal medicine and in hospice and palliative medicine, Dr. Johnson began
his career as a pharmacist, earning a Bachelor of Science degree in pharmacy at Purdue
University in West Lafayette, Indiana. He received a medical degree at the University of
Chicago, Pritzker School of Medicine, where he attained honor status, and completed his
residency in internal medicine at Rush Presbyterian-St. Luke's Medical Center.
Sharon R. Latson
Senior Director of Access Initiatives
Sharon Latson is the Senior Director of Access Initiatives for VITAS Healthcare Corporation.
Ms. Latson is responsible for development of national programs and initiatives to expand
awareness of and access to VITAS hospice services in diverse and underserved communities.
In her previous position Ms. Latson coordinated the professional and community outreach
campaign for the 2000 PBS broadcast of On Our Own Terms: Moyers on Dying series. Ms.
Latson secured funding from The Robert Wood Johnson Foundation and served as the director
for The Last Miles of the Way Home: A National Conference to Improve End of Life Care for
African Americans. Ms. Latson also directed a national project for the development of a
culturally sensitive end-of-life curriculum for health care providers titled, A Progressive
Palliative Care Educational Curriculum for the Care of African Americans at Life’s End
(APPEAL). The APPEAL project was recently awarded a Quality of Care grant from the Aetna
Foundation.
Ms. Latson, is the co-principal investigator on the Key Topics on End-of-Life Care for African
Americans project with the Duke Institute on Care at the End of Life. She also directed the full
publication of the eleven articles addressing end-of-life care for African Americans. She serves on
the board of directors of the Foundation for Hospices in Sub-Saharan Africa; Women Living with
Pain Initiative and the Intercultural Cancer Council.
Ms. Latson holds a Bachelor of Arts degree in Marketing and Communications from Columbia
College in Chicago, IL and is currently pursing a Masters in Communications.
13
Gwendolyn W. London, D.Min
London & Associates, Silver Spring, MD
Gwendolyn London, D.Min, was the Interim Director the Duke Institute on Care at the End of
Life. Prior to her position at Duke Dr. London had a 20-year tenure with Blue Cross and Blue
Shield of the National Capital Area, Dr. London left the field to pursue a career in direct services
to patients and families. She has been involved in the field of end-of-life care since 1982 when
she became a volunteer at Hospice of Washington, the first inpatient hospice facility in the
United States.
Previously employed at the DC Partnership to Improve End of Life Care, Dr. London was the
first executive director of the Robert Wood Johnson Foundation Community State Partnership
organization, where she directed the activities of a coalition of over 60 organizations involved in
the care of the dying. A long-term advocate of improved end-of-life care, she has a strong
commitment to the need for policy initiatives, public education, professional education and
research in this area.
Dr. London has extensive experience as a practitioner, educator and administrator and has held
various positions related to the care of the dying. She has worked as a Hospice Chaplain,
Hospice Bereavement Coordinator, Hospital Chaplain and Associate Minister at a 1700 member
urban congregation. In each of these positions, she did extensive work with patients and families
from diverse cultural backgrounds.
14
Richard Payne, MD
Esther Colliflower Director
Duke Divinity School, Durham, NC
Richard Payne is an internationally known expert in the areas of pain relief, care for those near
death, oncology and neurology, and is the Ester Colliflower Director of the Duke Institute on
Care at the End of Life at the Duke Divinity School. The Institute seeks to create knowledge and
rediscover wisdoms about life’s end through interdisciplinary research and scholarship,
teaching, and community outreach.
Prior to his appointment at Duke, Dr. Payne led the Pain and Palliative Care Service at Memorial
Sloan-Kettering Cancer Center in New York City. During this time at Memorial Sloan-Kettering,
he held the Anne Burnett Tandy Chair in Neurology. Dr. Payne directed the program's clinical
and rehabilitation services as well as research and training programs. He also served as
Professor of Neurology and Pharmacology at Weill Medical College of Cornell University.
From 2003-2004, Dr. Payne was President of the American Pain Society. He is certified in
hospice and palliative medicine by The American Board of Hospice and Palliative Medicine, in
neurology & pain medicine by The American Board of Psychiatry and Neurology, and is a
diplomat of The American Board of Pain Medicine. Dr. Payne was Chief, Pain & Symptom
Management Program, Department of Neurology, M.D. Anderson Cancer Center, Houston, TX
from 1992-1998.
Currently, Dr. Payne serves as the chair of the board of Foundation for Hospices in Sub-Saharan
Africa (FHSSA) of The National Hospice and Palliative Care Organization and is also a board
member of the National Coalition of Cancer Survivors. He co-chairs the Palliative Care Steering
Committee of the National Quality Forum (NQF) and is a member of the Long Term Care
Commission of the NQF. He has published over 250 peer-reviewed papers, articles and opinion
pieces.
Dr. Payne received his B.A in molecular biophysics and biochemistry from Yale University, 1973
and his M.D. from Harvard University, 1977. He completed post graduate training in medicine
at the Peter Bent Brigham Hospital in Boston, MA, in neurology at the Cornell Campus of the
New York Presbyterian Hospital, and a post- graduate fellowship in neuro-oncology and pain
medicine at Memorial Sloan-Kettering Cancer Center.
15
Rosalyn Priester
Director
Amani Care Program of the Trinity United Community Health Corporation, an affiliate of the
Deacon Priester is director for the Amani Care Program. The program offers members of the
African American community and other communities of Greater Chicago end-of-life care that is
enriched with spiritual healing, wholeness peace and dignity.
Decon Prister has been a member of Trinty United Church of Christ since 1982 and served
actively for the deacon ministry for the last 13 years. From 1996-98 she completed a clinical
pastoral care practicum with emphasis on hospice ministry; and in 1999 she completed a
hospice management certificate program at the University of Illinois. She is board member of
the Chicago End of Life Care Coalition. Deacon Priester works closely with the HIV/AIDS
support ministry and provides staff support for education, prevention, testing and treatment
programs at Trinity United Church of Christ.
Beny Primm, MD
Executive Director
Addiction Research & Treatment Corporation, New York, NY
Beny Primm has been the executive director of the Addiction Research & Treatment Corporation
(ARTC) of Brooklyn, New York, since its inception in 1969. As one of the largest minority nonprofit community-based substance abuse treatment programs in the country, the ARTC provides
a multimodality service and treatment program for approximately 2,300 men and women,
primarily members of severely underserved populations. Since 1983, Dr. Primm has served as
president of the Urban Resource Institute, a non-profit organization that provides supportive
social and medical services to critical populations within New York City. Among them are
multiservice shelters for battered women and their children, intermediate care facilities and
other services for mentally challenged individuals as well as outpatient alcoholic treatment
services.
In recognition of his authority on the Human Immunodeficiency Virus (HIV), addiction and
AIDS, Dr. Primm was appointed to the Presidential Commission of the Human
Immunodeficiency Virus Epidemic in 1987. Dr. Primm is known internationally for his
commitment to substance abuse treatment and the treatment of the psychological, social and
economic ills that fuel that disease. In 1989, Dr. Primm was appointed by the Secretary of Health
and Human Services to direct the federal government's Center for Substance Abuse Treatment
(CSAT), formerly known as the Office for Treatment Improvement (OTI). In that capacity,
Dr. Primm was responsible for the development of programs, policies and initiatives relating
to the treatment of addictive disorders and the improvement of the quality and effectiveness of
substance abuse treatment as well as treatment capacity expansion for the United States and
its territories. Dr. Primm is widely published in treatment of drug abuse and related
disorders in peer journals and textbooks.
He is the recipient of numerous awards and in November 2000, was granted the Surgeon
General's Medallion for U.S. Public Health Service for his lifetime of leadership in mental health
and substance abuse treatment in the battle against the AIDS epidemic. Dr. Primm earned
his medical degree from the University of Geneva, Geneva, Switzerland.
16
Gloria Ramsey, JD, RN
Director, Community Outreach and Information Dissemination, Silver Spring, MD
A registered nurse and attorney, Gloria Ramsey is known for her work in bioethics; in particular,
her research has focused on questions concerning end-of-life care, decisional capacity in the
elderly, and legal and ethical issues for individuals and families with HIV disease and AIDS.
Currently, she is the director of Community Outreach and Information Dissemination at the
Center for Health Disparities Research and Education at the Uniformed Services University of
the Health Sciences. In that role she directs community outreach efforts to reduce and eliminate
health disparities among African Americans, Hispanics and the Military. Dr. Ramsey’s prior
research examined reasons why African Americans do and do not complete advance directives
and is working with investigators from Duke University Center for End of Life Care to develop
and implement the didactic content for, APPEAL, 'A Progressive Palliative Care Educational
Curriculum for the Care of African-Americans at Life’s End,' a project funded by the Robert
Wood Johnson and Aetna Foundations. Gloria Ramsey was the former director of a program
funded by The Teagle Foundation, Inc. entitled, "Building Academic Capacity in Bioethics and
Nursing” at New York University.
Dr. Ramsey's clinical interests include ethical issues in clinical practice, ethics education and
consultation and the unique ethical and legal issues that arise in nursing practice. Dr. Ramsey
was the founding author of an online column for The Nursing Spectrum Career Management
resource for RNs, "Ask the Experts," entitled "Law & Ethics."
In addition, she is involved in a variety of professional organizations and as a member of the
American Nurses Association (ANA), she served from 1996-2001 as a member of the ANA Code
of Ethics Project Task Force, reviewing and revising the Code of Ethics. She is also past secretary
of the American Society for Bioethics and Humanities (ASBH) Nurse Affinity Group.
After graduating from Felician College, Lodi, NJ (AAS, Nursing) and Jersey City State College
(BS, Nursing, the National Dean’s List), Gloria completed a JD in 1992 at Seton Hall University
School of Law. In May 1996, she completed a Certificate in Bioethics and the Medical
Humanities from Columbia College of Physicians & Surgeons and the Montefiore Medical
Center/Albert Einstein College of Medicine.
Prior to joining NYU, Dr. Ramsey worked as a law clerk for Honorable Carol A. Ferentz,
Superior Court of New Jersey, Law Division, Civil Part, Newark, NJ. She is a member of the
Health Law Section of the New Jersey Bar Association, the New York City Bar Association
Bioethics Committee, and the American Association of Nurse Attorneys. Additionally, she is a
member of a number of boards and is published in the areas of nursing ethics education,
research and clinical practice.
17
Kevin Sanders
Editor
Ohio University College of Osteopathic Medicine, Athens, OH
For the past eight years, Kevin M. Sanders has been editor/writer for the Ohio University
College of Osteopathic Medicine. There he directs a number of areas, including the medical
school's Web and print news. He also was the managing editor for the college's alumni
publication, The Ohio D.O. Under his tenure as editor, The Ohio D.O. won three awards for "Best
Article or Feature Story" and one for best print publication from the American Association of
Colleges of Osteopathic Medicine's annual communication competition. Prior to that, he was
the assistant director for the university's Institute for Applied and Professional Ethics. Mr.
Sanders is a graduate of the university's E.W. Scripps School of Journalism at Ohio University
A native Chicagoan, Mr. Sanders worked in the securities industry (Chicago Board Options
Exchange and Pacific Coast Options Exchange) for 15 years before becoming a journalist. In
Chicago, he helped to launch the magazine, Chicago AfterHours, and was its managing editor
for two years. He has an extensive background in desktop publishing, philosophy, and politics.
Pernessa C. Seele
Founder and CEO
The Balm in Gilead, Inc. New York, NY
In 1989, Pernessa Seele founded The Balm In Gilead, Inc., a non-profit organization whose
mission is to mobilize churches to become centers of compassion, education and prevention in
the struggle against the devastation of HIV/AIDS in the Black community. The Balm in
Gilead's pioneering achievements have enabled thousands of churches to become leaders in
preventing HIV by providing comprehensive educational programs for the community and
offering compassionate support to those affected by HIV and AIDS.
As founder and CEO of The Balm In Gilead, Ms. Seele has conceived and implemented several
innovative programs that are being used both nationally and internationally. This includes The
Black Church Week of Prayer for the Healing of AIDS, the premier program of The Balm In
Gilead, and now the largest AIDS awareness program in the US targeting African Americans since
its inception in 1989. Ms. Seele is an advisor to the Congressional Black Caucus' Health Brain
Trust and a consultant to the Mailman School of Public Health at Columbia University.
Ms. Seele received a Master of Science degree in immunology from Atlanta University and a
bachelor of science in biology from Clark College. She is a native of Lincolnville, South Carolina.
18
Paul Smith, D.Min
Pastor
First Presbyterian Church, Brooklyn, NY
Paul Smith is the pastor of First Presbyterian Church in Brooklyn, New York. Under his caring
and pastoral administration, high-church ceremony has disappeared. His sermons have a
strong emotional appeal based on his deep commitment and his personal experiences of faith.
He transfers his conviction to the congregants simply and directly.
Dr. Smith's sermons contain symbolism from a multitude of different cultures. The service
music encompasses gospel, rock, jazz, and traditional hymns, sources that reflect both the
growing multicultural membership and the Presbyterian reform tradition that opens the door
to new ideas and approaches within the church.
Dr. Smith is passionate about outreach to the community as well as to the larger communities of
New York City and the world. In 1997, he preached at the Presbyterian Church of Southern
Africa in Johannesburg, South Africa, to mark its centenary. He has brought sensitivity
training to the local police precinct in Brooklyn, introduced a lunch program for the homeless
and has brought many famous leaders to the pulpit to speak for social causes including the Dalai
Lama, Ambassador Andrew Young, Arthur Ashe and former House Speaker Tom Foley. The
Reverend is guided and inspired by his late mentor, Dr. Howard Thurman, whose life and
beliefs embraced the philosophy of inclusion. Dr. Smith's sincerity and religious fervor have
brought enthusiasm for all spiritual aspects of life to the First Church.
Robert A. Washington, PhD, MDiv
Minister
Montgomery Hospice Service , Washington, DC
During his 29-year career, Dr. Washington, a licensed clinical psychologist and minister, has held
various administrative positions in mental health including commissioner of Mental Health
Services for the District of Columbia and executive director of the William Wendt Center for Loss
and Healing. For the last 18 years, he has specialized in grief counseling -working with those
who are ill, dying and/or bereaved, and training others to do likewise. As a result of this
work, Dr. Washington developed a strong interest in the interface of psychology and
spirituality. He retired from mental health administration to pursue a second career in
ministry. An ordained minister in the United Church of Christ, Dr. Washington currently
works as a chaplain for Montgomery Hospice.
19
September Williams, MD
Physician, Filmmaker and Clinical Medical Ethicist
San Francisco, CA
September Williams' cross-disciplinary clinical background encompasses internal, family,
emergency, refugee and palliative care medicine. Her clinical base is in palliative care and
geriatrics at the San Francisco VA Medical Center, while her film base remains at Ninth Month
Productions in Santa Fe, New Mexico, devoted to cross-cultural competency.
Dr. Williams served as a part of the inaugural team opening the Tuskegee University National
Center for Bioethics in Research and Health Care as the National Center's consulting clinical
medical ethicist and communications specialist. Williams' career as a screenwriter and filmmaker
emerged when she began to explore film's impact on people's autonomy and expectations of
medicine, particularly for her African American community, when she was the Lowell T.
Coggleshall Fellow at the University of Chicago Center for Clinical Medical Ethics (1990-91).
She subsequently learned the filmmaking craft in the screenwriting and directing MFA program at
Columbia College, Chicago and in the MS program in screenwriting at Boston University. Along
with feature film scripts and shorter pieces, she is the writer/director of the medically based short
films, Shared Decisions and A Conversation on Moral Intuition, and the feature-length
documentary film, When We Are Asked, the source material for The Robert Wood Johnson
Foundation APPEAL project (A Progressive Palliative Care Educational Curriculum for the
Café f African Americans.
She is a co-editor of Bioethics Research Directions and Concerns for African Americans, and a
contributing editor for the landmark bioethics volume, It Just Ain't Fair. Additionally, Dr.
Williams has been a consultant in areas of bioethical, medical and cross-cultural competency to a
number of filmmakers and television directors, producers and writers. She was a
National Endowment for Humanities Fellow in Black Film at the University of Central
Florida's Zora Neal Hurston Institute.
Dr. Williams has appeared in, and provided research for films and television broadcasts including
"Frontline," "AIDS Report" and "Nightline." She has consulted with organizations from the
Center for Disease Control and the Harvard AIDS Institute to the Initiative to Improve Palliative
Care for African Americans and Last Acts Partners. In 2002, Williams was the Elizabeth Layton
Memorial Lecturer at the Midwest Bioethics Center. Dr. Williams was the bioethics and medical
voice for the Health Rhythms Radio (healthradio.org), America's first health radio program
reflecting diversity and concern for ending health care disparities.
Dr. Williams is currently the attending physician in internal medicine, geriatrics, palliative care
and clinical ethics at Laguna Honda Hospital and Rehabilitation Center in San Francisco, CA
20
Kristy Woods, MD, MPH
Director
Maya Angelou Research Center for Minority Health, Winston Salem, NC
Kristy F. Woods, MD, MPH, is professor of medicine, Department of Internal Medicine and was
named the inaugural director of the Maya Angelou Research Center on Minority Health at Wake
Forest University School of Medicine in June 2003. Dr. Woods' primary interests are in
health care delivery, utilization patterns and health outcomes for underserved and minority
populations with chronic diseases. She has extensive clinical and research experience in
sickle cell disease, having served as director of education programs, Medical College of
Georgia Sickle Cell Center and the director for, Meharry Sickle Cell Center.
Prior to joining Wake Forest University, Dr. Woods held faculty appointments at the Pritzker
School of Medicine at the University of Chicago, Medical College of Georgia in Augusta, Georgia
and Meharry Medical College and Vanderbilt University School of Medicine in Nashville,
Tennessee. Dr. Woods has served as principal investigator or co-investigator on a number of
National Institute of Health supported studies.
Dr. Woods received her Bachelor’s Degree from Oberlin College, Ohio, her medical degree from
Tulane University School of Medicine in New Orleans and her Master’s Degree in Public Health
from Tulane University School of Public Health and Tropical Medicine.
In addition to her role on the Blue Ribbon Advisory Board, Dr. Woods serves on the board of
directors of the Urban League of Winston-Salem.
Jeremiah Wright, Jr., D.Min
Senior Pastor
Jeremiah A. Wright Jr. takes seriously not only the call to worship but also the call to take action
as mandated by the Gospel. Under his leadership, Trinity adopted the motto "Unashamedly Black
and Unapologetically Christian" and has set out to make activism within and on behalf of the
African American community a key aspect of the church's mission. An outspoken community
leader, Wright has been vocal in making once-taboo issues, such as AIDS, a priority within the
African American church leadership and service. His commitment to political activism, coupled
with his dedication to the African American sermonic tradition, has made him a highly soughtafter speaker nationally and internationally.
The Reverend Wright is the recipient of numerous awards, including three honorary doctorates
and three presidential commendations. An accomplished musician and author, he has written
four books, numerous articles, countless sermons and was named one of Ebony magazines’s
top fifteen preachers.
Wright has been the pastor at Chicago's Trinity United Church of Christ since 1972, seeing its
membership grow from 87 adult members to a congregation of nearly 10,000. Wright's early
education took place in Philadelphia's public schools. From there, he went on to earn a BA and an
MA from Howard University, an MA from the University of Chicago and a doctorate in divinity
from United Theological College, where he studied under the eminent Samuel DeWitt Proctor.
In addition to national and international ministry, the Reverend Wright serves on several boards
of directors and committees.
1
Resources
APPEAL-A Progressive Palliative Care Educational Curriculum for the Care of African
Americans at Life’s End
Contact: www.iceol.duke.edu
Housed at the Duke Institute on Care at the End of Life, APPEAL is a curriculum to educate health
care professionals with essential clinical competencies and practical skills needed to provide
culturally appropriate palliative and quality end-of life-care services to African American patients
and their families.
Association of Black Cardiologists
www.abcardio.org
Founded in 1974, the Association of Black Cardiologists, Inc., (ABC) is a nonprofit
organization with an international membership of over 600 health care professionals. The ABC is
dedicated to eliminating the disparities related to cardiovascular disease in all people of color.
Today, the ABC's public and private partnerships continue to increase the impact in communities
across the nation.
Balm In Gilead
www.balmgilead.org
The Balm In Gilead is a not-for-profit, non-governmental organization with an international
mission to stop the spread of HIV/AIDS throughout the African Diaspora by building the capacity of
faith communities to provide AIDS education and support networks for all people living and
affected by HIV/AIDS . The Balm In Gilead's pioneering achievements have enabled thousands of
churches to become leaders in preventing HIV by providing comprehensive educational programs
and offering compassionate support to encourage those infected to seek and maintain treatment.
Congressional Black Caucus
www.cbcfinc.org
In January 1969, newly elected African American representatives of the 77th Congress joined six
incumbents to form the "Democratic Select Committee. The Committee was renamed the
Congressional Black Caucus and the CBC was born in 1971. The goals of CBC is to positively
influence the course of events pertinent to African Americans and others of similar experience and
situation, and to achieve greater equity for persons of African descent in the design and content of
domestic and international programs and services. While the CBC has been primarily focused on
the concerns of African Americans, the Caucus has also been at the forefront of legislative
campaigns for human and civil rights for all citizens.
www.iceol.duke.edu
The mission of the Institute is to create and promote the growth of knowledge and to encourage
the application of that knowledge in caring for the whole person at life's end. The Institute is
conceived as a dynamic organization, fully engaged in the intellectual lives of the university and
the larger community and driven by interdisciplinary scholarship, research and practical
application.
2
Georgia State Medical Association
www.gastatemedicalassoc.org
Georgia State Medical Association, Inc., (GSMA) is the state affiliate of the National Medical
Association (NMA). The association was founded in 1893.Founded as an organization to give a
voice to African-American and other minority physicians in the state of Georgia; Georgia State
Medical Association is a non-exclusive organization which works to represent its membership in all
medical, scientific, legislative, public health and related affairs.
The association is represented on special committees in all area of State government affecting
medical practitioners in Georgia, some of which are the Department of Medical Assistance, the State
of Georgia Health Planning Agency, the Georgia Drug Utilization Review Board, the Georgia
Medical Care Foundation. Members of Georgia State Medical Association serve on the faculties of
all medical schools in the state of Georgia -Morehouse School of Medicine, Emory University School
of Medicine, the Medical College of Georgia, and Mercer University School of Medicine.
NAACP
www.naacp.org
The mission of the National Association for the Advancement of Colored People is to ensure the
political, educational, social and economic equality of rights of all persons and to eliminate racial
hatred and racial discrimination.
National Association of Black Journalists
www.nabj.org
The National Association of Black Journalists (NABJ) is an organization of journalists’ students and
media related professionals that provide quality programs and services to advocates on behalf of
black journalists worldwide.
National Black Nurses Association
www.nbna.org
The NBNA represents approximately 150,000 African American nurses from the USA, Eastern
Caribbean and Africa, with 76 chartered chapters nationwide. The purpose of the association is to
provide a forum for collective action by African American nurses to "investigate, define and
determine what the health care needs of African Americans are and to implement change to make
available to African Americans and other minorities health care commensurate with that of the
larger society." NBNA is committed to excellence in education and conducts continuing education
programs for nurses and allied health professionals throughout the year. The association provides
annual scholarships for students.
National Association of Black Social Workers
www.nabsw.org
The NABSW was founded in May 1968 in San Francisco. The organization was formed in response
to issues relating to providing human care in the Black community, educating social workers for
effective services in the Black community and providing opportunities for participation of Black
social workers in the social welfare arena.
3
National Medical Association
www.nmanet.org
The National Medical Association (NMA) is the largest and oldest national organization
representing African American physicians and their patients in the United States. The NMA is a
501(c) (3) national professional and scientific organization representing the interests of more than
25,000 African American physicians and the patients they serve. NMA is committed to improving
the quality of health among minorities and disadvantaged people through its membership,
professional development, community health education, advocacy, research and partnerships with
federal and private agencies. Throughout its history the National Medical Association has focused
primarily on health issues related to African Americans and medically underserved populations;
however, its principles, goals, initiatives and philosophy encompass all ethnic groups.
National Resource Center on Diversity
www.nrcd.com
NRCD is an information and technical assistance resource for coalitions and community leaders
reaching out to diverse populations. The center provides information, materials, training and
networking opportunities to improve end-of-life care for Latinos, African Americans, Native
Americans, Asian Americans and others. NRCD works with coalitions and community-based
organizations around the country to strengthen local efforts to reach minority audiences. We
support community awareness efforts that explain how to reach diverse communities and encourage
the development of community-based end-of-life care programs that are sensitive to a community’s
multiracial and multicultural members.
Rainbow/PUSH Coalition
www.rainbowpush.org
The Rainbow/PUSH Coalition is a progressive organization fighting for social change. The Rainbow/PUSH
Coalition is a combination of a grassroots and political organization merged together in 1997, which seeks to
protect, defend and gain civil rights and to even the economic and educational playing fields in all aspects of
American life and to bring peace to the world. RPC is the merger of Operation PUSH (founded in 1971) and
the National Rainbow Coalition (founded in 1985).
www.vitas.com
VITAS Innovative Hospice Care®, is a pioneer and leader in the hospice movement since 1978, it is
the nation’s largest provider of end-of-life care. Headquartered in Miami, Florida, VITAS
(pronounced VEE-tahs) operates 40 hospice programs in 15 states (Arizona, California,
Connecticut, Delaware, District of Columbia, Florida, Georgia, Illinois, Kansas, Missouri, New
Jersey, Ohio, Pennsylvania, Texas, Virginia and Wisconsin. VITAS is developing innovative
programs to increase the awareness and utilization of hospice services to diverse populations.

Key Topics on End-of-Life Care for African Americans

Transcription

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